AlGhazi-Zappaterra IIbozza

Education
16
M-PED/03 – Didattica e Pedagogia Speciale
A peer-reviewed book series in social pedagogy, theories of education,

didactics, special educative needs, history of education, children’s
literature, teacher training, adult education, gender education, inter-
cultural pedagogy and didactics, training and career guidance, new
technologies, experimental education.
Directors: Fabrizio Manuel Sirignano (Università degli Studi Suor

Orsola Benincasa, Napoli), Maria Teresa Trisciuzzi (Libera Università
di Bolzano), Tamara Zappaterra (Università degli Studi di Ferrara),
Andrea Traverso (Università degli Studi di Genova)
International Scientific Committee: Enricomaria Corbi (Università degli

Studi Suor Orsola Benincasa, Napoli), Liliana Dozza (Libera Università
di Bolzano), Dolores Limón Dominguez (Universidad de Sevilla),
Fernando López Noguero (Universidad Pablo de Olavide, Sevilla),
Anna Ascenzi (Università degli Studi di Macerata), Antonella Cagnolati
(Università degli Studi di Foggia), Hans-Heino Ewers (Johann Wolfgang
Goethe-Universität, Frankfurt am Main), José Luis Hernández Huerta
(Università di Valladolid), Serenella Besio (Università degli Studi di
Bergamo), Berta Martini (Università degli Studi di Urbino), Claire
E. White (Wheelock College, Boston, MA), Francisca Gonzalez Gil
(Universidad de Salamanca), Teresa Grange (Università della Valle
d’Aosta), Pierpaolo Limone (Università degli Studi di Foggia), Jarmo
Viteli (University of Tampere, Finland), Monica Fantin (Universitade
Federal de Santa Catarina, Brazil)
Perspectives
on Autistic Spectrum Disorder
a cura di
Loredana Al Ghazi, Tamara Zappaterra
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Summary
Foreword
Loredana Al Ghazi, Tamara Zappaterra 7
First part
Theoretical Aspects of Autism Spectrum Disorders
From schizoid psychopathy to a natural human variation.

Deconstructing Autism
Loredana Al Ghazi 11
The social construction of autism as disability

Mihai Predescu, Ioana Dârjan 33
Second part
Aspects of Development, Intervention Methodologies,
Researches on Autism
Case management in Autism Spectrum Disorders

Anca Luștrea 45
Assessing Children with Autism Spectrum Disorder

Daniel Mara, Elena Lucia Mara 59
Treatment fads and Autism Spectrum Disorder

Jasmina Stošić, Matea Begić, Ana Wagner Jakab 75
Communication and language difficulties

in Autism Spectrum Disorder
Ioana Dârjan, Mihai Predescu 87
6 Children’s play. Multifaceted aspects
The Maladaptive Behaviors in the Autism Spectrum Disorders.

Guidelines for the Evidence-Based Educational Intervention
Saverio Fontani 97
Sexuality and Sex Education in Autism

Tommaso Fratini 115
The Autistic Spectrum Disorder and the Quality of Life.

Researches, Instruments, Results
Atalia Onițiu, Melinda Dincă, Daniel Lucheș 129
Third part
Studies on Autism Spectrum Disorder
from National Contexts
Students with Autism Spectrum Disorder in Mainstream

Classrooms in Italy.
Tackling the Challenge
Tamara Zappaterra 151
A comparison of knowledge about Autism Spectrum Disorders

between students in Romania, Italy and Croatia
Jasmina Stošić, Ana Wagner Jakab, Matea Begić 163
Applied Behavior Analysis. The Romanian story

Loredana Al Ghazi, Damian Nedescu 181
Foreword
Loredana Al Ghazi, Tamara Zappaterra
This book represents one of the intellectual outputs of the Euro-

pean project “Innovative Academic Course on Integrative Interven-
tions for Children with Autism Spectrum Disorders - IACIIC-ASD”
(KA2 – Cooperation for Innovation and the Exchange of Good Prac-
tices – KA203 Stratetic Partnership for Higher Education), which
lasted from November 2017 to November 2019 (and its publication is
funded by the Erasmus + Programme).
The coordinator of the project was the West University of Ti-
misoara (Romania), and the partners were the Sveuciliste u Zabrebu
Educacijsko-Rehabilitacijski Acijski Facultet (Croatia), and “Lucian
Blaga” University of Sibiu (Romania) and Università degli Studi di
Firenze (Italy). Università degli Studi di Firenze was also the leading
organisation for this output.
Autism Spectrum Disorder (ASD) refers to a group of complex
neurodevelopmental disorders characterized by repetitive and specific
patterns of behavior and difficulties with social communication and
interaction (APA, 2013). At international level, the theme of ASD has
received particular attention in recent years from the point of view of
educational policies and educational institutions, from which the need
to take stock of this issue at European level. According to the Higher
Education Reform the partnership proposed an innovative approach
to the ASD, that enhanced the quality and relevance of student’s
knowledge and skills in the field. This not only enrich the curricular
offer of partner Universities, but also respond to a specific need will
increase the number of qualified and high-skilled graduates who will
work with children wit ASD and their families. The four Universities
jointly delivered a Course in a blended manner (face-to-face and via
an online platoform), and the students from tree different countries
(Romania, Italy, Croatia) gained acces to a set of activities supported
by ITC, in line with the EU policy paper on Rethinking Education.
8 Perspectives on Autistic Spectrum Disorder
The book is structured in three parts: the first one is theoretical,

the second one includes contributions concerning specific aspects of
ASD, and the third gathers some studies emphasizing the national
contexts.
First part
Theoretical Aspects
of Autism Spectrum Disorders
From schizoid psychopathy to a
natural human variation
Deconstructing autism 1
Loredana Al Ghazi 2
I. The past
1. A little bit of history

Nothing exists until it has a name 3
Kanner once said “I never discovered autism; it was always there”

(Silberman, 2015: 188). Hundred years before Kanner’s seminal arti-
cles, published in 1943-1944, that marked “the birth of autism”, we
can find livresque accounts of what now we call autistic features and au-
tistic people (for more, see Donvan & Zucker, 2016; Silberman, 2015;
Fitzgerald, 2019) descriptions of historical or fictional figures]. If we
can ignore these records as non-scientific, we can not overlook all the
journal-published articles before 1943 in wich autistic traits were de-
scribed, before they were folded into the umbrella of a syndrome:
– in 1926, Grunia Sukhareva reported “a detailed description of
autistic traits in children in the Monatsschrift für Psychiatrie und
Neurologie” (Manouilenko & Bejerot, 2015: 1761) in 6 cases she
observed for two years, in Moscow, at Psychoneurological Depart-
ment for Children. She used the label schizoid psychopathy, in order
to differentiate from schizophrenia, being aware that in children,
1
With reference to: Constructing autism (2005), a book by Majia Holmer Nadesan
and Deconstructing Harry, a movie by Woody Allen. Harry remembers events from his past
and scenes from his best-selling books as characters, real and fictional, tryng to understand
what makes him the way he is now.
2
West University of Timișoara, The University Clinic for Therapies and Psycho-ped-
agogical Counselling.
3
A quote by Lorna Wing, a pioneer in the field of childhood developmental disorders
who advanced understanding of autism worldwide, introduced the term Asperger syndrome
in 1976; and founded the National Autistic Society (NAS) in the UK; considered to be the
architect of the spectrum model of autism; mother of an autistic daughter (Wikipedia).
“the clinical picture shares certain features with schizophrenia, but

which yet differs profoundly from schizophrenia” (Wolff, 1996:
131). The article appeared initially in Russian (1925), and the En-
glish translation appeared only in 1996 (Wolff, 1996).
– in 1935, Anni Weiss published in American Journal of Orthopsychi-
atry the case of Gottfried, a boy she consulted while she was work-
ing at the University Children’s Clinic in Vienna (Weiss, 1935);
– in 1938, Hans Asperger gave the first public lecture on autism at
the University Hospital in Vienna, published in Wiener Klinis-
che Wochenschrift (archive stored in Johns Hopkins University
Library) (Czeck, 2018). He used the term autistic to label the
self-withdrawn, one of Bleuler’s four putative fundamental distur-
bances characteristic of schizophrenia. Feinstein (2010: 11) citing
Maria Asperger Felder (2008), Asperger’s daughter, evokes a letter
sent by Asperger to one colleague in 1934, where he points on “the
difficulties of diagnostic concepts and suggests the possibility that
‘autistic’ might be a useful term”.
– in 1943, Kanner reported 11 cases in his article Autistic distur-
bances of affective contact in the American journal Nervous Child
(Kanner, 1943).
– in 1944, Asperger presented 4 cases in “The ‘Autistic Psychopaths’
in Childhood” (“Die ‘Autistischen Psychopathen’ im Kindesalter”),
in Archiv fur Psychiatrie und Nervenkrankheiten (Asperger, 1991;
Wing, 1981). As in Suckarevas case, the paper was brought to the
attention of the English-speaking world many years later (Van Kre-
velen 1962, 1971; Wing, 1981). Also, in 1944, Kanner coines the
term infantile autism in his second groudbreaking article Early in-
fantile autism (Kanner, 1944).
Kanner was certainly not the first one to describe the clinical pic-
ture of autism, nor the first who had the idea to label the features as
autistic (borrowing the term from Bleuler), but he was the first to
publish a paper that contained both the description of the autistic
features and the label for them (Donvan & Zucker, 2016; Feinstein,
2010; Silberman, 2015). So, 75 years ago, the official story of autism
begins, and for decades Kanner was viewed as “the father of autism”.
Kanner repeatedly said that it was for the first time, in 1943, that such
cases were ever described in the literature: “some children whose con-
dition differs so markedly and uniquely from anything reported so
far” (Kanner, 1943: 217). Although he emphasized the uniqueness of
the condition and the difference from schizophrenia, other authors
From schizoid psychopathy to a natural human variation 13
assumed that the two conditions were not so different. Kanner’s col-
league, psychiatrist Louise Despert, was contrariety by his statement,
replying: “Had he not been reading my papers?” (Silberman, 2015:
124). In a response article she wrote> “It seems to me that the great-
est contribution this article is making is in its thorough, accurate, and
illuminating description of clinical cases”, … “However, if you will
permit me to say so, I object to the coining of new terminology for
entities which, if not so carefully described, have been previously re-
ported” (for more on childhood schizoprhrenia see Potter, 1933; Des-
pert, 1938; Bender, 1941; Fitzgerald, 2019).
2. The diagnosis
You shall be called by a new name… 4
“The new terminology” was necessary despite Despert’s opin-

ion, for the simple reason that a new pathology was decelled. Since
Suchareva, Asperger and Kanner’s first descriptions, the diagnosis has
undergone multiple modifications informed by research and clinical
work conducted over the next several decades. As longitudinal and
other data appeared it was made clear that autism formed a distinct
diagnostic category. It took decades from the first published articles,
for the American Psychiatric Association to introduce autism in the
Bible of American psychiatrists-Diagnostic and Statistical Manual of
Mental Disorders 5.
Right in the first edition of DSM (DSM-I, 1952), autism was pres-
ent under the name of “schizophrenic reaction, childhood type”.
According to APA, the use of the term “reaction” throughout DSM
“reflected the influence of Adolf Meyer’s psychobiological view that
mental disorders represented reactions of the personality to psycho-
logical, social, and biological factors” (APA, n.d.-b). DSM failed to
provide a definition of autism, indicating more what this condition
is not rather than what it is: “The clinical picture may differ from
4
A quote from the Bible “You shall be called by a new name which the mouth of the
Lord shall designate” (Isaiah 62:2). Christian designate themselves by all kinds of names
which the mouth of the Lord did not name.
5
We will refer further at the Diagnostic and Statistical Manual of Mental Disorders
released by The American Psychiatric Association’s (APA) and not to International Classifi-
cation of Diseases (ICD) which is the global standard for diagnostic health information, for
the reason that first appearance of autism (although not under the name of autism) was in
the DSM and only years later in the 8th edition of ICD) under the label of Infantile autism
(ICD-8, 1967).
schizophrenic reactions occurring in other age periods because of the

immaturity and plasticity of the patient at the time of onset of the re-
action” (Silberman, 2015: 237). Of course, autism and schizophrenia,
are in part, overlapping conditions, but even for Suchareva, 45 years
earlier, it was clear that they differ a lot. The autism in DSM-I was less
than Suckareva’s description but close to Despert opinions.
The second edition of DSM (DSM-II, 1968) published 16 years
later was not much better, citing “autistic, atypical and withdrawn
behavior”, “general unevenness”, “failure to develop identity sepa-
rate from the mother’s” (for more see Silberman, 2015: Chapter X,
Pandora’s box). We are in the sixties, right in the middle of an epoque
when mothers were blamed for their children’s disorder. Since Kan-
ner first article on autism, more and more cases were detected, but the
cause of autism remained unknown and medication ineffective (for
more, see Loretta Bender on electric shock therapy and antipsychotic
medication [Bender, 1960] used to treat autism).
As early as 1948, The Times Magazine headlined Medicine: Frosted
Children, inducing the idea that “diaper-aged schizoids”, “happiest
when left alone” are the products of cold parents that are “freezing
their children” into autism. Kanner postulated from the beginning
that autism was innate (surprisingly, as he never observed babies,
just one child below the age of three when Kanner, the other ten
children in his report were between the ages of 3 and 14 years). A
sad metaphor was born then- “the refrigerator mother”, a mother
incapable to offer love and nurture her child. The author of this met-
aphor was no other than Leo Kanner. (Donvan & Zucker, 2016; Sil-
berman, 2015). 20 years after the Times Magazine article, the second
edition of DSM seems to follow the same line. This time, not Kanner
but Bruno Bethelheim is the primadonna singing the tragic aria of a
mother punished with an autistic child for the guilt of not wanting
to be a mother.
Bettelheim’s guess that ‘the precipitating factor in infantile autism
is the parent’s wish that his child should not exist’ (Finn, 1997). As
director of Orthogenic School at the University of Chicago, a residen-
tial treatment center, he believed is better for such children to un-
dergo a “parentectomy”, a separation of children from their parents
for extended periods of time (Gardner, 2000). Bethelheim’s book,
The empty fortress, published in 1967 was a great success. The same
year, Clara Clairborne Park published The Siege (1967), a sensitive
and touching memoir of raising an autistic daughter. She failed to take
the empty fortress under the siege in the public or professionals’ eye.
The psychoanalytical (Roser, 1996) pseudo-scientific (Herbert, Sharp

& Brandon, 2002) bettlheimian theory on autism etiology even shad-
owed Bernard Rimland’s theory, which emphasized the neurological
aspects of Infantile Autism: The Syndrome and Its Implications for a
Neural Theory of Behavior (Rimland, 1964).
The third edition of DSM, was released in 1980. It was the mo-
ment when psychoanalytical was dismissed as ethiology and Kan-
ner’s infantile autism syndrome was finally recognized as a diagnosis
distinct from schizophrenia> “pervasive developmental disorder”.
DSM_III listed specific criteria required for a diagnosis (occurring
in the first 30 months of life). But then, DSM-III was revised in 1987
(DSM-III-R) and it seems that “autism had been transformed into
something that Kanner would have barely recognized” (Silberman,
2015: 151; 424). This is because DSM-III-R recognized the hetero-
geneity of the disorder and broadened the conceptualization of au-
tism (Volkmar, Bregman, Cohen & Cicchetti, 1988). This approach
differs from that used in DSM-IIl, which was closer of Kanner view
of autism as monolithic, tending to emphasize a narrower and more
specific diagnostic concept. DSM-III-R gave us a first glimpse of au-
tism as a spectrum.
In 1994, in the fourth edition of DSM (1994), APA introduced the
Asperger syndrome, two years after its inclusion as a standard diagno-
sis in the 10th edition of the World Health Organization’s diagnostic
manual, International Classification of Diseases (ICD-10).
Finally, both views on autism-Kanner and Asperger-get their rec-
ognition as separate diagnoses. Although both labeled their cases “au-
tistic,” they observed different populations of children, so the condi-
tions they described diverged in many respects. Both insisted on the
differences between the, until the very end: Asperger considered his
syndrome to be different from Kanner’s (Donvan & Zucker, 2016:
241 citing Wing, 1981). Also, Kanner considered that Asperger syn-
drome “if at all related to infantile autism, is at best a 42nd cousin”
(Silberman, 2015: 140 citing Kanner, 1970).
Lorna Wing reflected on her work and her victory of seeing the
Asperger Syndrome recognized as a standalone diagnosis and she was
not convinced that her success it was necessarily a positive develop-
ment for the domain: “I wish I hadn’t done it. I would like to throw all
labels away today, including Asperger’s syndrome, and move towards
the dimensional approach. Labels don’t mean anything, because you
can get such a wide variety of profilessome people are brilliant at
mathematics but get pleasure rocking back and forth twiddling their
hands.The trouble is that it would be very hard to make an interna-

tional system based on profiles. Human beings seem to need catego-
ries” (Feinstein, 2010: 000). She admitted “Since the publication of
my paper on Asperger, I have felt like Pandora after she opened the
box” (Fitzgerald, 2017: 16).
What was the effect of DSM (III-IV) categorization? The diagno-
sis is put based on symptoms and the patient must meet a minimum
number of criteria to be diagnosed. Somehow it seems like a circu-
lar logic: How is a person diagnosed with autism? Because he has
the symptoms of autism. Why is he having symptoms? Because he
has autism. We cannot rely on lab or imagistic techniques to identify
biomarkers in case of autism. Autism can be diagnosed only through
clinical interviews, observation, and secondary reports from parents.
Allen Frances, Chair of the DSM-IV Task Force once said “Nice
someone understands what DSM is/what it isn’t. Mental disorders
are constructs, not diseases. Descriptive, not explanatory. Helpful in
communication/treatment planning, but no claims re causality/homo-
geneity/clear boundaries. We wrote this in DSM-IV Intro but no one
read it” (Shedler, 2019).
The fifth and last edition of DSM (DSM-5, 2013) eliminated Kan-
ner and Asperger syndromes as separate diagnoses. Both syndromes
were included in the spectrum model anticipated by Lorna Wing,
while Childhood disintegrative disorder and Rett syndrome were
removed from the autism category. Sukareva’s work remained un-
known although she described autistic features two decades before
Kanner and Asperger. More than that, she was very close to the crite-
ria listed in the fifth edition of DSM. Manouilenko, a psychiatrist in
Stockholm compared DSM-5’s criteria to Sukhareva’s observations
and the result was impressive: DSM-5 describes ASD consisting in
social deficits- Sukhareva, as a “flattened affective life”, “lack of fa-
cial expressiveness and expressive movements” and “keeping apart
from their peers”; DSM-5 list stereotyped or repetitive behaviors,
restricted interests and sensory sensitivities- Sukhareva described as
“talking in stereotypic ways,” with “strong interests pursued exclu-
sively” and “sensitivities to specific noises or smells” (Manouilenko
& Bejerot, 2015b).
II. The present
1. ASD- the disorder

I need a doctor
Call me a doctor… 6
The medical model was for a long time the solely proposed to ex-
plain autism and it is no wonder since the pioneers of autism were
all psychiatrists. It is easy to understand that they saw autism as an
illness that must be treated. Even nowadays, autism is still regarded
as a disorder by many health professionals and parents who stick to
the deficit-based characterizations of autism. The parents say “there
is something wrong with my child, doctor!”, they ask for treatments,
for prescriptions… But in autism case it is not the case! Right after
the diagnosis, the parents will find out there is no cure for autism. In
psychiatric terms, based on the classical theory in psychopathology
(Leonhard, 1976) we maid say that autism is a psychosis due to the
poor contact of autistic people with reality. French psychiatrists, most
of them representing the psychoanalytical school, still stand by the
definition of autism as psychosis or disease. Even if they are served
with the argument that autistic people do have a “lack of contact with
reality” or a ‘lack of order or intelligible pattern’ (Baron-Cohen, 2017)
but do not experience delusions or hallucinations, they reply with the
question: then why the psychiatrists are the ones called to put a diag-
nosis? why the Americans keep it in their “manual of mental disor-
ders”? Maybe the answer is that, maintaining the autism “in the man-
ual”, is in benefit of both patients and practitioners. Coding autism
as a disorder, allow facilitating communication between professionals
so they can manage and justify the coverage for interventions and ser-
vices (Beck, 2018). One of the aims of the standardization of symp-
tomatology was also to facilitate the development of effective forms of
interventions. On the other hand, there are voices who condemn cre-
ating fixed disease categories, claiming that this is the way psychiatry
attempts to legitimize itself through rigid adherence to the biomedical
model that illnesses are stable entities (Leveto, 2018).
A recent study finds that psychiatric diagnoses DSM-5 are “scien-
tifically meaningless”. The researchers conclude that there is “a huge
amount of overlap in symptoms between diagnoses”; “diagnoses tell us
6
The title of a rap song by Dr. Dre featuring Eminem, calling for the doctor as the
solution for his mental disorder.
little about the individual patient and what treatment they need”, and
“trauma has a limited causal role in, despite research evidence to the
contrary” (Allsopp, Read, Corcoran & Kinderman, 2019). Except of
trauma (because still there is no proof that early exposure to any kind
of trauma can play a role in later developing specific autistic symp-
toms), this can be the case of autism too. More and more voices raise
recently against bio-medical model for explaining mental disorders by
creating fixed disease categories, arguing that “pragmatic criteria may
give clinical flexibility but undermine the diagnostic model”. Still, we
need the diagnosis to provide the services that people on the spectrum
need. Sometimes, at least în Romania this is the case, the diagnostic is
“negotiated” in order to permit the access to free services, interven-
tions or medication (note: drugs are not administrated for autism, but
for co-occurring conditions).
It is quite a paradox that in the same time, in the doctor’s office,
a parent insists for a diagnosis and a cure, but in a different context
(kindergarten, school, playground, etc.) the same parent claims that
his child is just different., no lesser than the neurotypical children. It
is a matter of sameness and difference, we will discuss later.
But it is also easy to understand why the parents are playing this
card: with all the progress, autism has no cure for the moment, as the
causes are still unknown. Decades ago, people on the spectrum were
seen as being “mentally ill”. The individual/medical/deficit model,
posit that all problems and challenges faced by an autistic person is
their own, because they are “deficient” in some area (such as the peo-
ple that don’t have or lost their sense of hearing or vision. Impairment
was viewed as an illness). In some cases, the “illness” can be cured: the
sight, the hearing, the mobility, even the mental health can be totally,
or to some extent, restored trough surgical interventions, prosthet-
ics, medication, and so on… One of our studies (Al Ghazi et al., in
press) concluded among others that all the parents that received the
diagnosis for their children want to “get rid of autism”. They hope for
a complete recovery from autism, especially if they find in the media
and literature about the children “who escaped autism”. There are
some well-documented accounts of “autism recovery” (in Romania,
the most notorious case is Radu 7), by “recovery” understanding the
level where we can not distinguish anymore the autistic persons from
their peers. They hope for a cure to be discovered in the future, they
are willing to try all kinds of treatments (sometimes pseudoscien-
7
See the next chapter “ABA. The Romanian story”.
tific new treatments or harmful combination of interventions). From

this point of view, those parents are totally immersed in the medical
model. When it comes to autistic persons’ rights and the way the soci-
ety responds to their requirements, we believe that the social model of
disability suits them better and we will further present some aspects
of this model.
2. ASD- the disability

I don’t need no doctor
’Cause I know what’s ailing me… 8
Over the years, some interventions were developed in order to help

people with autism (and their families) to have at least a better life
quality if not being productive and have a social successful life. Even
if they will reach the final destination of recovery from autism, on the
road to it, a lot of support and empathy are needed. If autism is not
to be seen as a medical condition needed to be cured or prevented
(Barnes et al., 1999; Charlton, 1998), then it can be regarded as a
disability. The disability rights movement strongly opposed to em-
bedding disability into the medical model arguing this “can be deeply
dehumanizing” and ”can evoke unwanted pity” (Oliver, 1990; Wil-
liams, 1996). The social model of disability asserts that a person is
only in part disable due to his own condition and in part, the disabil-
ity is created by the way that society understands to respond to their
specific needs. In the case of autism, as the proponents of disability
movement sustain, instead of trying to make autistic people to adapt
to our world by forcing social interaction and communication and by
reducing their restricted and repetitive behavior, maybe we can create
the proper context for them to develop and flourish.
We all have our strengths and difficulties in some areas and show
disability in others. Not everybody is able to sing or to dance, many
of us are tone-deaf, so in a choir or on the dance floor we are to be
seen as disabled. There is a metaphor of the fish required to climb
a tree, attributed to Einstein, often quoted by the supporters of the
social model of disability. Expanding on it, someone said about peo-
ple on the spectrum: “We are freshwater fish in saltwater. Put us in
freshwater and we are fine. Put us in saltwater and we struggle to
8
The title of a Ray Charles song about the comfort that love and understanding can
provide.
survive”. Are we the “saltwater creatures” that are disturbed by those

coming from the “freshwater”? Can we desalinate part of our water
so we can include and integrate autistic people? And if we are doing
so, it is for them (because they ask and we can do this) or it is for us
too- for they can enrich our world with their gifts? (for more on ”de-
salination” or deinstitutionalization see Chapter 4: Education, Chap-
ter 5: Before, Outside, and After the Classroom [Pitney, 2015] and
Chapter 4: Autism Education and the Illusions of Inclusion, Chapter
5: Educating Youth With ASDs for Their Future [Siegel, 2018]). Kan-
ner wrote: “The study of the natural history of human development,
its deviations, and treatment is a ramified, objective, pluralistic, rela-
tivistic, and melioristic science. In its present state, and hopefully in
the future, such study will be what I like to call a science dunked in
the milk of human kindness” (Kanner, 1976). We believe that human
kindness played a great role in shifting the paradigm from seeing
the autistic people as deficient (having a condition that should be
eradicated or, if possible, prevented (Barnes et al., 1999; Charlton,
1998) to a softer approach through the lenses of the social model of
disability.
In a world of flowers, Armstrong imagined the following dialog
between the doctors and their flower-patients:
Visualize a gigantic sunflower coming into the rose psychiatrist’s office.
The psychiatrist pulls out its diagnostic tools and in a matter of a half hour
or so has come up with a diagnosis: “You suffer from hugism. It’s a treatable
condition if caught early enough, but alas, there’s not too much we can do for
you at this point in your development. We do however have some strategies
that can help you learn to cope with your disorder” […] Next on the doctor’s
schedule is a tiny bluet. The rose psychiatrist gives the bluet a few diagnostic
tests and a full physical examination. Then it renders its judgment: ‘Sorry
Bluet, but you have GD, or growing disability. We think it’s genetic. How-
ever, you needn’t worry. With appropriate treatment, you can learn to live
a productive and successful life in a plot of well-drained sandy loam some-
where.’ Finally, a calla lily enters the consulting room […]: “You have PDD,
or petal deficit disorder. This can be controlled, though not cured, with a
specially designed formula” (Armstrong, 2010: 12).
What would be like “to treat” all the flowers until they will all have
the correct dimensions, the right form, the proper scent? Maybe it is
our power to cease to cultivate flowers that do not fit in our model,
maybe it is possible to graft the species that do not correspond to our
garden design, but maybe we can also change our views and see the
beauty of diversity and accept that some varieties of “plants” come
in different shapes and colors, not for spoiling the symmetry of our
garden, but to make a difference. We presented this metaphor as an
introduction for the third and most recent approach of autism – the
neurodiversity – where autism is regarded not as a medical condition
or disability, but as difference.
3. ASD- the difference

Call me by your name 9.
Neurodiversity originated as a movement among individuals la-

beled with autism spectrum disorders who wanted to be seen as dif-
ferent, not disabled or ill. As early as 1997, Harvey Blume wrote for
the NYTimes:
Yet, in trying to come to terms with an NT [neurotypical]-dominated
world, autistics are neither willing nor able to give up their own customs.
Instead, they are proposing a new social compact, one emphasizing neuro-
logical pluralism. […] The consensus emerging from the Internet forums and
Web sites where autistics congregate […] is that NT is only one of many
neurological configurations – the dominant one certainly, but not necessarily
the best (Blume, 1997).
However, even if Blume was the first to write about neurological

pluralism and autism as difference, it is Judy Singer (an Australian
sociologist, a person on the spectrum herself and the mother of a girl
with Asperger) who is credited with the coinage of the term neurodi-
versity. Her 1998 honors thesis title was “Odd people in: the birth of
community amongst people on the Autistic Spectrum: a personal explo-
ration of a new social movement based on neurological diversity”. A
few months later, Singer’s work was published in the UK as a chap-
ter in Disability Discourse (Corker & French, 1999: 64). The title was
“Why Can’t You Be Normal for Once in Your Life?” – “an expression
of frustration heard almost daily in Singer’s family…” (Craft, n.d.).
The title deserves attention for the fact that the neurodiversity pro-
ponents eschew negative language such as “abnormal”, “disorder”,
“deficit”, “impairment”, and receive autism as a way of being. The
9
The title of a movie by Luca Guadagnino based on the acclaimed novel by André
Aciman, a sensual and transcendent tale of the first love of a 17-year-old young man with a
7 years older man. They hide their love, not knowing if their love will be accepted by their
families and society. With reference to the parallel made by neurodiversity supporters and
gay pride.
way we call or address to autistic persons, the way we use language to

describe autism, seems to have a strong impact on shaping people’s
perception of it (Kenny et al., 2016). The first large-scale study which
examined the terms that UK community members use to describe au-
tism (commissioned by the UK National Autistic Society) showed that
there is not one single accepted term used when talking about autistic
people. We use terms like “autistic person”, “person with autism”,
“on the autism spectrum’ or simply “people on the spectrum” 10. Us-
ing of person-first language 11 is not necessary intrinsic negative (Hal-
mari, 2011). Jim Sinclair (1999), autism activist, affirms that an autis-
tic person can never, and should never attempt to, be separated from
their autism. Also, avoiding to use person-first language, referring
to a person with autism, instead of identity-based language, placing
positive in front of nouns, is not implying that autism is intrinsically
negative. In the public discourse, in Romania, calling other people
autistic when they are not, seems to be a greater offense for autistic
people or autistic children’s parents than for the nonautistic person
to whom the words were addressed 12. We argue that more important
than the way we label autism is what we can and must do for them.
Judy Rapoport senior child psychiatrist and a former chief of child
psychiatry at the National Institutes of Mental Health NIMH, told,
the anthropologist-sociologist Roy Richard Grinker, in a 2007 con-
versation quoted in In a different Key: “I am incredibly disciplined in
the diagnostic classifications in my research, but in my private prac-
tice, I’ll call a kid a zebra if it will get him the educational services I
think he needs”. (Donvan & Zucker, 2015). But what if they do not
want “to be helped”? Neurodiversity rejects the idea of “cure” (Or-
tega, 2009). While autism activism fights for more money invested in
10
“The term – on the autism spectrum – was preferred by significant numbers of
autistic adults (45%), parents (38%), family members/friends (48%) and especially pro-
fessionals (60%). The term ‘autistic’ was endorsed by a large percentage of autistic adults,
family members/friends and parents but by considerably fewer professionals; ‘person with
autism’ was endorsed by almost half of professionals but by fewer autistic adults and par-
ents” (p. 446).
11
Language that refers to people first as individuals and then to their disability only if
necessary (Bailey, 1991; Blaska, 1993). Terms such as ‘disabled person’ and ‘the disabled’
were held to give undue prominence to the disability and to equate a person completely
with their disability.
12
The Romanian PM asked public apologies for labeling some politicians autistic: “I
believe these people are autistic and do not see and hear what is visible to all people of good
faith”, she said. The Association of Parents of Children with Autism reacted by an open
letter and the National Council for Combating Discrimination was notified.
research for therapies, treatments, finding the cause of autism, iden-

tifying biomarkers (as early as possible, through prenatal tests), the
autistic activism is focused on acceptance of autism as a way of being.
For instance, a successful intervention that can eliminate flapping, or
will establish a sustained eye contact, or facilitate the acceptance of
being touched and hugged (things that many parents especially wish
from their autistic children) is seen invasive and even unethical (for
more see the affidavit of Michelle Dawson’s and her intervention at
the Supreme Court of Canada against ABA on http://www.sentex.
net/~nexus23/naa_sup.html).
Orsini (2012) quoting Silverman (2011) touched a sensitive point
when described autistic people as “characteristically dependent upon
the goodwill or benevolence of others, whether they are sympathetic
policymakers who have been touched by autism or the loving parents
and caring friends who perform much of the emotional labour that
autism requires”.
The neurodiversity proponents fight for rights, identity, and autis-
tic culture more than for governmental support, coverage for services,
etc. They claim that, from a political standpoint, differences in brain
structure and neurological functioning have no more significance than
differences in race or gender (Singer, n.d.). Craft quoting Singer: “For
me, the key significance of the Autism Spectrum lies in its call for and
anticipation of a politics of neurological diversity, or neurodiversity.
The neurologically different represent a new addition to the familiar
political categories of class/gender/race and will augment the insights
of the social model of disability”. (Craft, n.d.). While the concepts of
disability and neurodiversity are not incompatible, the concepts of
disorder and neurodiversity are. Maybe the most poignant critique to
neurodiversity is based on individuals with autism who have intellec-
tual disability, limited communication skills, co-occurring conditions.
75% of autistic people also have intellectual disabilities and sensory
difficulties, while others are high-functioning. Jaarsma and Welin
show that “the broad version of the neurodiversity claim, covering
low-functioning as well as high-functioning autism, is problematic.
Only a narrow conception of neurodiversity, referring exclusively
to high-functioning autists, is reasonable” (Jaarsma & Welin, 2012:
20). The authors conclude that “a psychiatric defect-based diagnosis”
could harm these people in the sense of pathologizing their existence,
while for the others the neurodiversity inclusion could mean the can-
cellation of their passport that permits them to access existing or fu-
ture treatments, medication, and interventions.
We also fully subscribe to a narrow concept of neurodiversity, as

well as fully concur with Baron-Cohen recent position on the matter:
“Disorder,” “disability,” “difference” and “disease” being applicable to
different forms of autism or to the co-occurring conditions. Neurodiversity
is a fact of nature; our brains are all different. So there is no point in being
a neurodiversity denier, any more than being a biodiversity denier. But by
taking a fine-grained look at the heterogeneity within autism we can see how
sometimes the neurodiversity model fits autism very well, and that sometimes
the disorder/medical model is a better explanation (Baron-Cohen, 2019).
Echoing the same author, considering autism as a different cogni-

tive style, rather than deficient, could mean that receiving the diag-
nosis of high-functioning autism would be like finding your child is
left-handed (Baron-Cohen, 2000) or gay. But gay people, left-handed,
do not need services and intervention designed and implemented spe-
cifically for them, they do not cost society, they are productive people.
When promoting autistic pride, many examples of successful past or
present figures appear: they are artists, writers, researchers… When
they talk about their accomplishments, they mention their differently
wired brain, and autism is viewed as a gift. Although it is impossible
to prove that the correlation between achievements and the presence
of autism means that autism is the cause. It would be like saying that
a great fashion designer made history in haute couture because he
is gay. Both neurodiversity and gay movements rely on “the corpo-
real difference” (differently wired brains, homosexual bodies)-they
are distinct from others, but no less valuable than neurotypical or
straight people. So they are simultaneously claiming that neurodiverse
and neurotypical are both “the same and different” (Runswick-Cole,
2014). Continuing the analogy, it is shown that homosexuality also
was viewed as a disorder until it was decided that the challenges that
homosexuals faced were the outcome of social conditions rather than
an inherent feature of a disorder, the main problem being that gay
people did not fit to the “heterosexual and biological norm” (Richard-
son, 2005). Similarly, many autists could have psychiatric and psycho-
logical problems due to the autism policy character of present society
(Jaarsma & Welin, 2012). So, from the neurodiversity viewpoint, if
autism will be regarded as a natural human variation, many of the
problems that autistic people face will fade. Considering autism as a
form of diversity of human minds (Armstrong, 2010; Feinstein, 2010;
Silberman, 2015; Donvan & Zucker, 2016; Baron-Cohen, 2017) will
lead to the removal of disorder-stigma and thus more of the autistic
persons (and those close to them) will embrace autism as a part of

their identity. Being autistic must give them a sense of belonging to a
community where they see themselves proud to be in and advocate for
their rights (Singer, 1999) (Bagatell, 2010). It was a matter of identity
too in other movements (black, women, disabled, gay, civil rights…)
which conducted to important changes in our society.
But not all the members of the community consider autism to be
an aspect of their identity (Davidson & Henderson, 2010). A mother
told me once: “I have had cancer a few years ago. I fought cancer
and, at the same time, I also fought for my rights and other people’s
rights to a proper treatment that in Romania was not available for us.
I never thought about myself as “cancerous”. I refused to accept can-
cer as a part of me, it was never mine, “my cancer”! It was something
that made me ill for a period of time- it came and go. And I think it is
the same as my daughter’s autism. She was not born autistic, as I was
not born cancerous. She was a normal child for the first and a half
years of her life. Then something happened and she lost her smile,
her joy…she was like trapped into something and we could never
reach her anymore. But I hope I will get my child back someday. Till
then, I fight with all my strength for her rights, education, integra-
tion and so on…”. So, not everyone endorses the idea that autism is
part of them or their child’s identity. Many community members face
challenges they or their children confront and thus they advocate
for new ways to treat, cure, or prevent autism. It was not a lack of
information or ignorance that made that mother to affirm that she
was not born with cancer or her daughter with autism. She was fully
aware of the fact that cancer or autism could be “written in their
genes”. But she also believed that “something can be done”, that it
is not “everything about the genes”, that it is a lot that we can do in
order to switch the way “we are programmed to develop a tumor”
or “differently brain-wired” in order to exhibit autistic features. So,
we can see there are two different perspectives that not necessarily
divide the community (Baron-Cohen, 2019) but also not necessarily
cooperate (Leveto, 2018): the autism rights movement (which resem-
bles a lot with the disability rights movement) and the neurodiversity
movement. Orsini (2012) distinguished between autism and autistic
activism (the rights, recognition of identity, autistic culture and ac-
ceptance of autism as neurological difference). Some parents, adult
autistic persons and professionals connected to the field advocate for
the rights of access to intervention supported by the government or
insurance companies, while others consider that it is a violation of the
autistic persons to be treated, not to be let the way they were meant
to be but forced to adapt and being “normalized”. These issues were
brought even to court in an attempt to obtain a legal backing either
for refusing to accept the therapy (Ortega, 2009), either for the right
to access therapy 13 (Orsini, 2012).
III. The future

What is it like to be a bat?
There is a notorious question asked by philosopher Thomas Nagel

(1974) “What is it like to be a bat?”. Echoing Nagel we can ask: “what
it is like to have autism or being autistic?”. Nagel explains that before
we can define what it is like to be a bat, we must develop a method that
can discern between the observed characteristics (third-person attrib-
utes) and the subjective state (first-person attributes). It was suggested
that (Pitney, 2015; Skubby, 2017) medical professionals are “far from
being thoroughly knowledgeable” about autism, in fact, autistic peo-
ple being in the position “to possess knowledge of their condition”.
Parnas, Sass and Zahavi (2013: 76, quoted by Beck, 2018) affirm that,
for example, the structured interview used by psychiatrists, psycholo-
gists, educators are “unable to capture the subtle forms of experience
and expression that constitute the essential psychiatric object”. Tak-
ing such insights into consideration, the conclusion should be that any
attempt by neurotypicals to define autism fails. We can accept that the
high functional autistic people could better describe the condition,
in the same way that a doctor could better understand, describe and
research diabetes, alcoholism, depression if he is a diabetic, alcoholic,
depressed himself (although it contrast with the author preference of
a phenomenological attitude that requires to bracket our own experi-
ence and let us be surprised by and opened to what other may bring).
But again, the same nagelian question can be asked: can a high-func-
tional autist answer what is like to be low-functioning or profound
autistic?
The well-known motto “Nothing about us without us” was trans-
posed in “By autistics for autistics”. The challenge of representing
autistic persons “is not resolved, however, by a simple recourse to this
organizing principle” (Orsini, 2012: 815).
13
Auton v. British Columbia.
Look what they done to my song… 14
Firzgerald (2019) predicts that the future of psychiatry will be

neurodevelopmental and that the neurodevelopmental spectrum is
far wider and far more important than suggested by DSM 5. At the
launch of DSM-5, APA called it a “living document” that would live
primarily online. Some updates appeared since its publication in 2013
but, to our knowledge, there are no planned revisions to the DSM for
the moment. In the ICD-11, autism criteria moved to a new, dedi-
cated ‘Autism Spectrum Disorder’ section which mirrors the DSM-5’s
criteria. The ICD-11 also makes a distinction between autism with
and without intellectual disability and highlights the fact that older
individuals and women sometimes can mask their autism traits. In
our opinion, as long as we remain at a descriptive level, a new edition
of any manual or classification would be like redecorating and invite
guests to a “new house” which is actually the same house. Moving into
a new house (or at least building a new floor or outbuildings to the
existing edifice) means to shift from descriptive to explanatory. With
all the progress in neuroscience, genetics, and brain scanning we still
can not understand the causes of autism. At least, the future seems
promising in establishing the diagnosis based on biomarkers (Hows-
mon et al., 2018) which will be a big step forward.
Maybe Asperger syndrome and high-functioning autism will no
longer be subsumed to Autism Spectrum Disorder in the future. If
so, it would be in line with the conception of a “narrow neurodiver-
sity” proposed by Jaarsma and Welin (2012). Maybe the aspies and
high-functional autists will totally escape from the next editions of
DSM and ICD, as the autistic activists suggest. Baron-Cohen (2017)
posits – but we cannot fully – agree that the neurodiversity alone,
if applied to DSM-5, could differently shape hundreds of diagnoses
and “revolutionize both the science and the practice of psychiatry”.
In our opinion, Science (not only psychiatry) can revolutionize the
field, rather than ideology. If questions like “what causes autism?”,
“can autism be prevented?”, “can autism be detected in the prenatal
stage?”, “can autism be cured?” will be fully and positively answered,
only then we will understand the power of movement as neurodiver-
sity. Will the parents decide to give birth to a child with autism, if they
14
Quote from Janice Joplin English version of Ils ont changé ma chanson, thesong and
title of album of Dalida (1970). And I think I’m half insane ma/ Look what they done to my
song/I wish I could find a good book to live in/Wish I could find a good book/Well if I could
find a real good book/I’d never have to come out and look at/What they done to my song…
precisely know where on the spectrum he will be, in terms of high or

low functionality? Will the parents be accused of negligence if they
will refuse to allow their child to be treated (medication, neurosurgi-
cal interventions)? Will an adult, proud member of the neurodiversity
community, take the pill and renounce at his autistic identity? 15
Maybe I’m right and maybe I’m wrong
Maybe I’m weak and maybe I’m strong… 16
We raised questions more than provide answers but no matter how

those questions will be answered in the future – in terms of diagnos-
tics, interventions, cure or labels – our creed stands firm: every child
and every person are unique and deserve to be looked at for their
strengths and valued for what they are and not for what they are ex-
pected to be. The author’s personal position is rooted in Existential
analysis and Positive psychology and therefore the plea for not unnec-
essary pathologize, not over-diagnose or over-treat mental disorders
in general and autism in particular. From an existential viewpoint, we
argue that autistic people must always be seen as persons first, what-
ever the diagnosis, the labels, the actual or future political claims will
be. Autistic people fully deserve respect, state and societal support
without being forced to fit into a (medical or neurodiversity) model.
We will close with an invitation to approach autism exercising a phe-
nomenological attitude, addressed to all those involved in the field:
One needs to reflect on one’s own pre-understandings, frameworks, and
biases regarding the (psychological, political, and ideological) motivation and
the nature of the question, in search for genuine openness in one’s conversa-
tional relation with the phenomenon.
One needs to overcome one’s subjective or private feelings, preferences,
inclinations, or expectations that may seduce or tempt one to come to prema-
ture, wishful, or one-sided understandings of an experience and that would
prevent one from coming to terms with a phenomenon as it is lived through
(Finlay, 2011: 83).
15
“Autism is a world” documentary: “As a person who lives with autism daily and
will not live a normal life, I find peoplewho are high functioning and saying society should
not look for a cure offensive. Theyhave no idea what our lives are like. Killing autism lets
me enjoy a life with greatfriends and allows me to go to college, but I must never let down
my guard or autismwill take over. I don’t want any more children to live, as I must, in this
constant state of war” (Rubin, 2005 quoted by Ortega, 2006).
16
Lyrics from Nevertheless song by Frank Sinatra “Maybe I’m right and maybe I’m
wrong Maybe I’m weak and maybe I’m strong But nevertheless…”.
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The social construction of autism as
disability
Mihai Predescu 1, Ioana Dârjan1
Introduction
At the beginning, autism was described as a syndrome. We could

argue that autism didn’t exist until it was described in term of ob-
servable symptoms. The first description of autism prompted us to
understand it from the beginning as a medical condition. Over the
years, we revisited our understanding of autism based not only on
scientific data from researches, but also based on changing attitudes
of people that interest with people with autistic spectrum disorders
(ASD).
In this chapter it is not our intention to draw a history of autism,
but mere to highlight the ever-changing understanding of autism and
the multiplicity of discourses that co-exist today in both scientific and
layman language.
We will begin by describing the effect of paradigmatic positioning
on autism understanding. For this, we will describe the main issues
that are relevant to our topic from medical, cultural, and critical par-
adigm. Then we will compare what are the effects on education and
intervention for children with ASD.
Later, we will focus on the societal attitudes toward children with
ASD and their families. We will try to outline an ecological approach
of education and support for children with ASD.
In the final part of our chapter we will try to argue for a more aware
theoretical positioning of practitioners. We will try to make a case for
a holistic view of the child with ASD and his/her family.
1
West University of Timisoara, University Clinic for Therapies and Psycho-pedagog-
ical Counselling. The authors of this chapter had equal contributions in concept develop-
ment, design, analysis, writing, or revision of this manuscript.
1. Paradigmatic positioning and understanding of autism
Paradigms are both a bless and a course in social science. In natural

sciences, paradigms are less frequent, and they tend to replace one an-
other. The paradigm shift came when new data cannot be explained
by the old theories and the search for new theories succeed in explain-
ing both the old and new data (Kuhn, 1962). In social science this is
not a case. Different paradigms tend to coexist and the new add a new
type of explanation that cannot be refuted by using the old theories
(Denzin & Lincoln, 2017).
In social science we have at least three paradigms, namely posi-
tivism/post-positivism, constructivism/interpretative approach, and
critical/emancipatory paradigm (Denzin & Lincoln, 2017). The first
is routed in classical theory of science and is based on the assumption
that the reality is objective and could be understood through direct
observation. The second is based on the idea that the social reality is
a construct, or an agreement of social actors based on language. The
reality is constructed in our mind as we try to make sense from the
world, so the main tool for knowledge is the analysis of our language
and social construction. The last is based on a historical, dialectical or
Marxist approach that stresses the divide in society and promotes a
science whose aim is to improve reality rather that to describe it.
In disabilities studies, the above-mentioned paradigms are embed-
ded in several different models of disability.
Autism started off as part of the medical model of disability. Ac-
cording to this model, autism is a disease. As we mentioned in the in-
troduction of this chapter, autism birth is the description of its central
symptoms. The medical model based on observable symptoms that
are combined into a syndrome with various forms follow the path of
describing other mental disorders. This is not surprising because from
early on, autism was sometimes described as infantile schizophrenia
(Al Ghazi, 2018). The medical model of autism has, undoubtedly, it’s
merit. First, it focuses on early detection and diagnosis. Such a detec-
tion is based on objectively behavioural symptoms, that should limit
the number of false identifications. The most used tools for assess-
ment and diagnosis are based on two manuals developed by medical
institution. The Diagnostical and Statistical Manual of Mental Dis-
orders (DSM V) is developed by the American Psychiatrist Associa-
tion. The International Classification of Functioning (ICF), derived
from International Classification of Diseases (ICD 11) is made by the
World Health Organisation and offers a comprehensive description
The social construction of autism as disability 35
of a medical-social model of deficiency, disability and handicap. In

this respect we could say that the medical model is a positivist one,
that treat autism as an objective condition that could be identified and
treated accordingly. The other benefit of this approach is that it offers
a clear path for intervention. The intervention focuses on reducing
specific symptomatology and increasing the body and mental func-
tioning. On the other hand, as all diseases and disorders, the locus of
autism is at individual level, as there are the resources for treatment.
That ignores the functioning in social context and the way the autistic
child interacts with the world.
A competing model is the cultural model, originated in United
Kingdom. According with this model, all people are mere different
version of an idealised model of human being (Barnes, Oliver & Bar-
ton, 2008). In other words, we are all different from one another so
it impossible to locate the disability at individual level. The disability
arose when society defines some traits as “good” or “acceptable” and
others as “bad” or “unacceptable”. Usually the most frequent traits
are considered normal and the other are considered abnormal. Then,
society makes rules and arrangements that favours the normal traits.
Think about the fact that most of appliances are designed for the
right-handed, or that most of the constructed space use visual cues.
Of course, that the minority that doesn’t possess the necessary trait
is in a disadvantaged position. The result is a growing discrepancy
between the groups and an increased isolation of those that are differ-
ent. According to this model, the society is disabling people. Autism
falls into the same discourse. People with autism are a form of human
diversity and we should take their needs into consideration when we
describe normal social functioning. This approach is clearly a con-
structivist one that promotes the reconsideration of our social values
and promotes social change. The source of disability is outside the
person, in our societal and cultural values.
Closely related is the American cultural model, that assumes that
people with disabilities (autism included) are a cultural minority. As
a cultural minority they should have specific rights when it came to
self-expression, inclusion or civil rights. This model is an emancipa-
tory one, based on highlighting the social injustice toward people with
autism and affirmative actions.
Finally, there is a post positivist model originated in Scandinavian
countries. The model defines disabilities as a mismatch between indi-
vidual resources and environmental resources and demands. In this
case we should strive to change both the person and the environment
for an improved functioning. The source of disability is in the inter-

action between person and its environment. According to this model,
the intervention should follow the principle of least restrictive envi-
ronment (Davis, 2006) that aims to make minimum required modifi-
cation in both environment and children to close the gap between the
individual resources and environmental demands.
Some key issues are to be addressed when it comes to autistic spec-
trum disorders, and different specialist, from different perspectives,
have different approaches.
Should we try to change the children with disability or the environ-

ment?
Depending on the theoretical positioning, some will advocate a
children focused intervention with two goals: to develop children’s
skills and world understanding, and to teach him/her standard be-
haviours that are appropriate to specific situations.
Others will focus on the authenticity of every diverse population
and will require a focus on social condition of children with ASD. In
that case, the goal is to build a more inclusive, diverse and tolerant
society.
Finally, there is a kind of functionalist approach that suggests holis-
tic intervention, both at individual, relational, and societal level. Such
a perspective is also favoured by us.
Our main argument for an ecological approach is that autism is a
condition that doesn’t affect only the child, but also families, human
relations and social policies. For us is clear that we need to make in-
tervention in child’s life space.
Should the treatment be based on behaviour modification or on cog-

nitive reframing?
Therapies that are symptom driven are quite popular in the treat-
ment of children with ASD. The approach is not wrong as long as
ASD is defined by observable and measurable behavioural symptoms.
Some of the psychologists will suggest that this is the only data driven
therapy and, subsequently, the only scientific approach. Another im-
portant factor is that they are championing a behavioural approach
of learning.
Opposite to this theoretical approach is the cognitive one that
stresses the cognitive undertone of every behaviour. Also, theories of
mind suggest that children with autism have difficulties in interpret-
ing reality. So, at least in theory, intervention based not only on be-
havioural learning should be more effective. Unfortunately, this line

of research does not make yet a significant impact although cognitive
behavioural therapy shows effectiveness in some area like treatment of
anxiety or training social skills.
Should we change environment, attitudes or both?

Regarding social intervention, again, there are more option. Some
suggest that we need a total social change in order to make social envi-
ronment a truly inclusive one, where there is no discrimination based
on disability, gender, race, age, ethnicity or sexual orientation. Other
suggest that society has a disabling effect on people with ASD due to
unrealistic demands for them. As an example, our education does not
favour children that are different to succeed. Attitudinal change, at so-
ciety level is never an easy or quick task. But, the increased exposure in
media shows a positive effect on ASD understanding and acceptance.
Why an ecological approach?

All ecological approaches are based on the idea, that we are social
animals that live in symbiosis with our environment.
Society is not merely a sum of people, but an extremely sophisti-
cated network of relations. It is so complex, that we needed to de-
velop a language and cultures in order to regulate and manage all this
complexity.
Autism, by definition, is an inability to navigate in such networks
due to a lack of understanding it and poor social and communication
skills. That put people with ASD in danger of isolation and/or exclu-
sion from the vast social network.
As humans, we live in a limited environment, that should provide
resources for our needs. What in interesting, is that this environment
isn’t only a physical one, but also a social one and a symbolic one. The
social environment has multiple ramification, but it starts with parents
and siblings, continues with relatives and friends of the family and
extends in different ways like parent’s workplace or children’s school
(Goodley, 2011).
The symbolic environments consist in language, communications,
values, norms and all intangible aspects of a culture.
Also, our needs are not exclusively physical, but also social. The ba-
sic, instinctual need are the base of the hierarchy of needs, but higher
we climb on this hierarchy, more social and cultural are these needs.
An ecological model of ASD intervention is a schema of a much
more diverse situation, but it highlights the main issues.
First, the child is our main focus. As any other person, the child
with ASD lives in a specific environment or ecological niche. The most
significant environment is the family. The family provides subsistence,
safety, acceptance and social and emotional support. Also, the child
with ASD is part of the family system and change it constantly. Since
the birth, the children with ASD change the family, its relations, its
focus et al. Having a child with ASD in family is a game changer. That
is why we believe that the intervention should include family at all
level, from goal setting to final assessment.
If we put the children in the centre of our model, from an eco-
logical perspective, we should define his/her life space or ecological
niche. Following Bronfenbrenner model (Bronfenbrenner, 1979),
we should describe it in terms of microsystem, mesosystem, exosys-
tem and macrosystem. At the more intimate level is the family as the
functional unit of support for the child with ASD. All the other sig-
nificant microsystems, like school environment or other peer interac-
tion groups or other support groups need to mediate their influence
through family (Kasari et al., 2011). That is why at the mesosystemic
level, any therapeutic intervention, even the assessment needs to part-
ner with family. More than that, we strongly support not only child’s
assessment and child focus intervention, but also family assessment
and family directed intervention and counselling (Predescu, Al Ghazi,
Dârjan, 2018).
If we take a functional approach, and we acknowledge that changes
have to be done both at child and its environment, than, at least a part
of the intervention should also assess the mesosystems, more specifically
possible opportunities and threats in related environment such as medi-
cal care system, parents’ occupational status, and available services.
Not least important, at the macrosystem level lies the values and
our core believes about children with ASD. The most challenging and
time resistant task is to negotiate a new social understanding of chil-
dren with ASD, focused more on the positives than negatives. The so-
cial change does not occur easily and almost always, the final result is
different than predicted. That doesn’t mean an impossibility of mean-
ingful social change. The last decades were a great step in changing
autism social acceptance (Dârjan & Luștrea, 2018).
Is the theory just an intellectual game?

From an epistemological and methodological perspective, we
should ask ourselves if the theoretical debates add or reduce the un-
certainty in the practice of helping children with autism.
Once we established that ASD is a real condition (either medical

or social constructed one), the issue is if we could define a best way of
understanding based of specific methods.
The paradox is that the competing theories in the field gives us a
map of understanding autism, and so, it helps us to better advance our
intervention. But how it is that possible?
Think of theory as a different map of a physical space. If it is a
Mercator map projection or an azimuthal one, like lambert, or conic
projection, they all represent the same space. And all of the are just an
approximation of physical space and have distortions. But all of them
helps us to navigate from point A to point B. The real value of the map
is in its utility for the purpose, and its availability.
When it comes to theory, the value of it resides in its utility for
planning interventions. But what is different from our map example,
autism is not such a clearly defined space. So, we must take account
on the fact that our choices are not only technical, but also are bak-
ing different moral position. And this is precisely why we think that
practitioners should have a better theoretical grounding and under-
standing.
The medical model is focused on a cold, technical approach of
ASD. The model promotes a limited social understanding of ASD and
its effects on families and school. The intervention is usually based at
individual level.
The social model of ASD leads to inclusive measures, especially
in school functioning, but tend to underestimate symptoms reducing
interventions. The interventions are most common centered on devel-
oping support networks for children with ASD.
The critical model is the most acknowledgeable of the social con-
flicts that are accompanying ASD intervention and is the most focused
on reducing social tensions. This model is the most global but tend to
be forget that the child with ASD should also try to adapt to different
existing social environments.
As a conclusion, we think that theoretical positioning is a necessity

if we should be fully aware about our interventions. As practitioners
we are able to have theoretical flexibility and to adapt our actions ac-
cordingly. If we want to make an advocacy action, to promote child’s
right to a meaningful education, I will position myself on critical
grounds. If I want to develop a clear support network at school level,
I will emphasize the need of school change from a social perspective.
But if I want to develop a specific skill of a child with ASD, probably
the intervention will be from a scientific established therapy, such as

ABA or Son-Rise or TEACCH.
Autism, like most of mental condition, is a social construction. The
meaning of ASD and the way we respond to its changing nature is also
a social scientific construction (Evans, 2012). Contextualizing inter-
vention is the best opportunity to make change not only at individual
level, but also at an ecological niche level. Wholistic intervention that
treat not only symptoms, but whole families, are our best options.
References
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ness of pre-service teachers in educational sciences. Journal of Educational
Sciences, 5 (38), 113-123.
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edition. Sage Publishing, New York.
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a central concept of child development in Britain. History of the Human
Sciences, 26 (3), 3-31.
Goodley, (2011). Disability studies. An interdisciplinary introduction. Sage,
London.
Kasari, C., Locke, J., Gulsrud, A. & Rotheram-Fuller, E. (2011). Social net-
works and friendships at school: Comparing children with and without
ASD. Journal of Autism and Developmental Disorders, 41 (5), 533-544.
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Second part
Aspects of Development,
Intervention Methodologies,
Researches on Autism
Case management
in Autism Spectrum Disorders
Anca Luștrea 1
1. Case management - a framework for effective interventions
In nowadays an abundance of new methods and techniques in ad-

dressing autism spectrum disorders (ASD) make it difficult to select
and implement the best intervention schema. The heterogeneity of
spectrum’s symptoms and different levels of functionality determine
a singularity of manifestations and developmental trajectories. Ev-
ery child is unique and cannot be put in a fix diagnostic pattern or
intervention prescription. We ask ourselves the question about how
can we design and implement an effective intervention plan for each
child, if there is no established pattern and the behaviors differ so
much?
The most important answer to that question is to approach each
case in an individual manner (McDonnell, McLaughlin & Morison,
1997). After all, we as specialists and even more the family, don’t aim
to fit the child into some patterns but to find the right formula to
adapt and lead a functional life. We must seek the best combination
of techniques, methods, curricular adaptations and accommodations
that positively impact each child and helps him integrate and live a
full live.
The second answer to the question is inter-professional collabo-
ration (Summers et al., 2016). Only in a mutual effort made by the
specialists, family, community and the child we can find our path in
this complex endeavor. Each of those above can contribute in a spe-
cific manner to the intervention, but only by a joint perspective and
effort can make it effective. The family put the child’s interest above
all and know him best, the specialists manage all the activities and
intervene, the community creates the social framework for inclusion,
1
West University of Timișoara.
accessibility and participation and the child puts a great time and ef-
fort to adapt and progress.
The case management is the proper framework to satisfy both prin-
ciples of individual approach and collaboration. Case management
can be defined as a methodology (Garcés & Ródenas, 2015) through
which all the interventions and action of professionals from medical,
educational, therapeutic and social fields are coordinated and orga-
nized in a scientific manner. It is also defined as a “rigorous work-
ing method, which aims at coordinating and monitoring all activities
carried out in the interests of intervention and the support of child
and his, family in order to develop and fully exploit the potential and
resources available to them” (Gherguţ, 2011: 176). Through case
management the focus is put on the child’s ecological development,
relative to his environment and significant relations. The strengths as
a starting point, the child’s needs, developmental milestones to be
reached and targeted behavior modifications are taken into consider-
ation from different perspectives but unified in a common view. The
child’s with ASD needs are so diverse that a single specialist cannot
satisfy them all. A multidisciplinary team is selected and designated to
work with the child. If each team member works independently the
progress is not significant. But if they combine their efforts in a joint
perspective the child’s progress can be optimal.
DSM V (American Psychiatric Association, 2013) introduced a
new perspective on ASD, of a continuous spectrum of manifestations
and different grades of functionality. The focus is put on qualitative
description of adaptive behaviors and the level of autonomous envi-
ronmental mastery.
The ASD case management should comply to this new perspective
and assess the effectiveness of intervention by the same criteria: the
child’s progress in terms of independent living skills and needed level
of support. To be effective, a psycho-pedagogical intervention needs
structure, a scientific approach, a complex view of the child’s needs
from an ecological perspective and consistency.
An effective case management needs structure and a systematic ap-
proach to intervention (Ross, Curry & Goodwin, 2011). Only a very
good designed plan, with aims, operationalized long and short terms
objectives, intertwined activities which follow the steps of develop-
mental trajectory and rigorous feed-back monitoring sessions can as-
sure the basic foundation of a successful intervention.
All the intervention processes, from the initial evaluation to moni-
toring, needs to be tackled in a scientific manner. Each member of the
Case management in Autism Spectrum Disorders 45
multidisciplinary team comes with a specific scientific methodology

and contribute to the intervention’s advance. But not just the thera-
peutic and educational activities should be carried out in a scientific
manner. The case management process itself should be treated as a
scientific domain and the proper methodology applied.
The complex nature of the case management resides from the child’s
complexity of needs. ASD impact the child’s development from mul-
tiple perspectives: social communication and interaction, atypical pat-
terns of behavior and interests, school adaptability or learning pace.
Each child has its own rhythm of development, with ups and downs,
with progress, stagnation and even regress at some point. Sometimes,
the factors that determine the developmental curve cannot be deter-
mined and an absolute correlation between developmental phases
and factors that occur cannot be drawn. Therefore, it is important to
have an ecological perspective of the child. In any moment we should
be able to link the child’s behavior with the context and the social
interactions. To do so we should know and understand the child in all
his significant environments and relations.
Consistency and perseverance can ensure the systematic nature of
the intervention (Ruble, Dalrymple & McGrew, 2012). Despite the
low points and even regress the intervention should continue, finding
new ways, better adapted. It is normal that with the child’s growth his
ways of interaction and his needs to change too. If we remain rigid in
the same intervention schema it can become overdone for that stage
of development and the child stagnates. So we should conduct an
adaptable and flexible case management centered on the current needs
of the child.
2. Domains of intervention in ASD
The general principles and processes of case management apply

to ASD also, with a certain specificity given by the spectrum specific
characteristics. First principle refers to the multidisciplinary team
component, which must reflect the main domains of intervention. In
ASD the cardinal domains of intervention are social communication
and interaction, language and communication, behavioral change,
sensory integration, adaptive living and academic learning. For each
area a specialist should be co-opted in the team to contribute with his
expertise to the team effort. In Figure 1 the main area of intervention
and their interconnectivity are presented.
Figure 1. Domains of intervention in ASD
In early intervention the focus is put on the therapeutic domain. In

the beginning the priorities lay on developing a therapeutic relation as
a base for all progress. Social interaction, from establishing eye contact,
joint attention habits to reciprocity in actions stand at the foundation
of learning. Also, basic skills should be acquired, such as focus on task,
be attentive, cooperate or show flexible interests and patterns of action.
Language and communication can be viewed as basic processes also.
Without the capacity of communication and social interaction the medi-
ated learning cannot occur. Sensory processing difficulties are frequent
in children with ASD, Baranek (2002) estimates a prevalence between
42% and 88%. These difficulties can lead to self-stimulating behaviors
which are destined to compensate for low sensory input or avoid over-
stimulation (Schaaf & Nightlinger, 2007). Addressing the sensory pro-
cessing difficulties can resolve a great deal of the child’s environmental
adjusting problems. Behavioral modifications are necessary from the
beginning to replace the non-functional patterns of behaviors with
adaptive ones. The adaptive skills are considered to be one of the best
predictors of functioning and independent living (Hill, Gray, Kamps
& Enrique Varela, 2015). In the early stages the children should learn
adaptive patterns to dress, feed, toilet use, fell asleep or play.
Through the therapeutic intervention the development of basic
social and functional skills by the school age is targeted. The school
inclusion from the beginning is an aim that should be addressed if
a least restrictive environment is intended to be provided. The edu-

cational intervention is complementary and continues the therapeu-
tic effort. They intersect and complement each other, have common
goals and address the same needs, but with different methodologies.
The school provides opportunities to deliver an comprehensive in-
tervention aiming attention at improving communication and social-
ization, and enlarging the child’s with ASD interests (Koegel, L. et
al., 2011). The school environment is propitious for developing peer
to peer relations. The child is emerged in a social climate that offers
him typical behavioral models, chances of interaction, social learning
situations and standards of social rules. To progress and be included
the child should develop adaptation skills that lead to personal prog-
ress. Also, the school is the best environment for learning, where the
child can master knowledge and learning skills and develop positive
attitudes toward self and others. But to be truly a useful process, cur-
ricular adaptations and differentiated instruction should be carried
out (Strogilos, Avramidis, Voulagka & Tragoulia, 2018).
The social domain is permanently aimed in all intervention’s stages.
The difficulties in social communication and interactions are a defin-
ing feature of ASD and an essential need that should be addressed
from the beginning. Objectives from the social domain should be
found in both therapeutic and educational activities. In early interven-
tion basic social skills are targeted, such as: establishing eye contact,
development of non-verbal social gestures such as showing, pointing,
waving and giving, or promote joint visual attention (Freye, 2018).
Later on the focus is put on learning through peer mediation of skills,
to develop appropriate requesting, commenting, and sharing (Morri-
son, Kamps, Garcia & Parker, 2001). At preschool age the targeted
skills include play skills (e.g., reciprocal interaction, turn-taking, pre-
tend play, following rules, sharing, etc), social communication skills
(e.g., question, starting and responding in conversations, understand-
ing non-verbal communication), friendship skills and socio-emotional
skills (e.g., empathy or affect recognition) (Gillis & Butler, 2007). At
school age the prevalent difficulties include starting and maintaining
interactions, perseveration on activities, turn-taking, perspective-tak-
ing and identifying and interpreting emotions (Koegel, L. et al.,
2011). In the transition from school to adulthood crucial areas to be
addressed are education, community living, employment and commu-
nity integration (Hendricks & Wehman, 2009).
All three domains are interrelated and support each other. In the
case management process developmental objectives are formulated
from all the areas of intervention and prioritized related to the most
stringent need of the child.
The case management process includes pre-referral, referral, eval-
uation, establish eligibility, development and implementation of the
IEP and monitoring. All these stages are designed to reach the optimal
level of functionality and social inclusion. Being a complex process
requires a multidisciplinary team to be carried out. Specialists from
various domains and the family collaborate to reach the maximum
potential of the child. To address every need, the multidisciplinary
team should be composed from psychologists, psycho-pedagogues,
speech therapists, auditory and visual therapists, physical therapist,
teachers and special educators. Nancarrow et al. (2013) enumerate 10
principles of a good interdisciplinary team: good communication, re-
specting/understanding roles, appropriate skill mix, quality and out-
comes of care, appropriate team processes and resources, clear vision,
flexibility, management, team culture – companionship, team sup-
port, and training and development opportunities. A good team can
be consolidated over time, so it is necessary to keep a consistent and
continuous team structure. The school can provide such a consisted
environment, beneficial for organizing and maintaining team work.
3. Multidisciplinary, interdisciplinary or transdisciplimary case

management?
The most common case management model is the multidisciplin-
ary one. But is still valid and can satisfy the complex needs of a child
with ASD? In table 1 are presented the main characteristics of the
three models of case management.
Table 1. Models of case management
Multidisciplinary CM Interdisciplinary CM Transdisciplinary CM

Individual responsibility Team responsibility Team responsibility
Complementary activities Complementary activities Transdisciplinary activities
Multidisciplinary activities Coordinated, integrated Coordinated,
Independent assessment services transdisciplinary services
Independent intervention Independent assessment Transdisciplinary assessment
planning Collaborative intervention in arena
Independent intervention planning Collaborative intervention
Independent monitoring Independent intervention planning
Collaborative monitor- Role sharing beyond
ing and reflection on the specializations
process Transdisciplinary monitoring
and collaborative reflection
All three models of case management are child-centered and put

the child’s needs in the center of the process. The main difference
between them is the level of collaboration between specialists. The
most collaborative model is the transdisciplinary one, in which col-
laboration reach the level of role sharing between specializations.
In the transdisciplinary model all intervention processes are carried
out in a transdisciplinary manner: the arena assessment, coordinated
planning, role release in activities’ implementation and sharing ex-
pertise (King et al., 2009). The least collaborative model is the mul-
tidisciplinary one, in which all activities are carried out indepen-
dently. The team offers services in all necessary domains, but the
level of collaboration is minimal. The team members assess the child
separately, plan and implement activities independently. However,
they meet regularly, share information and coordinate activities for
similar objectives. An intermediary model between those two is the
interdisciplinary one. The level of collaboration is high but does not
reach the role release from the trandisciplinary model. The assess-
ment and activities is still performed independently by each team
member, but the intervention planning, objectives’ prioritization
and monitoring/reflection on the intervention process are accom-
plished collaboratively.
Most certainly, the higher the degree of collaboration between the
team members, the greater the child’s benefit is. The progress is con-
jugated in a few important areas in small time intervals, all the spe-
cialists aiming the same final result. If the collaboration is minimal the
effort is dissipated in more directions and the child doesn’t progress
so fast and with no sustainable acquisitions. From this perspective,
the transdisciplinary model seems to be the best, but the necessary
level of expertise is high and the resources multitudinous.
Table 2. A SWOT analysis for the three models of case management
Strengths Weaknesses
Multi- Inter- Trans- Multi- Inter- Trans-
disciplinary disciplinary disciplinary disciplinary disciplinary disciplinary
Most known High level of Excellent level Low level of Needs Implies high
Evidence collaboration of collabora- collaboration collaboration resources
based Best for school tion Dissipated expertise Needs a spe-
Fewer re- setting High expertise effort Needs high cial expertise
sources needed Interdisciplin- Applied in Slow child supportive High costs
ary perspective natural setting progress conditions
Needs
collective
creativity
Opportunities Threats
Multi- Inter- Trans- Multi- Inter- Trans-
disciplinary disciplinary disciplinary disciplinary disciplinary disciplinary
Can be easily Very good Close Routine setting Lack of space Lack of
applied child progress collaboration Family refuses and time for resources
Team members Determine with family collaboration meetings Lack of funds
can be from sustainable Learning in Formal Specialists do for home-
different acquisitions natural setting process, not know how intervention
institutions Collaborative Transform without to collaborate Lack of
Starting point learning daily activities positive Specialists do specialist
for in learning consequences not want to
collaboration opportunities collaborate
Each model has its own benefits and setbacks (Table 2). Each
model should be adopted depending of the intervention stage and the
developmental needs.
In the early stages of intervention, the transdisciplinary model is
recommended. It can be carried out in the home environment, the be-
havioral observations completed in the child’s natural environment,
new behaviors and skills can be learned in the daily living climate. The
family can be taught to observe the child’s behavior and perform ther-
apeutic activities. For young children with ASD it is difficult to relate
with many different adults, so the trandisciplinary model, in which
only a few specialists directly interact with the child, is best suited.
For the school age the interdisciplinary model is convenient. The
school offers the best environment for organization and implemen-
tation of an interdisciplinary team. In school all kinds of specialists
can be found, from psychologists to special education teachers. The
school provides the opportunity to meet and collaborate on daily ba-
sis and coordinate the process through curriculum planning. For the
last stages of intervention, transition to adulthood and follow-up, the
coordination requirement is not so decisive, and the specialist could
be from different institutions, so the multidisciplinary model should
be applied.
4. Case management in early intervention in ASD

Early intervention is an essential condition for achieving success.
Only if the therapeutic process is started as soon as possible after the
diagnostic we can say that the intervention is on a good path. the long
term aims for early intervention are: optimum development and social
integration of children with ASD, reducing the social costs involved
in special education and later in social assistance and supporting the
families to meet their children’s needs. Between the most important

benefits of early intervention are:
– substantial progress achieved in all areas of development;
– preventing secondary (comorbid) disabilities;
– reducing family stress;
– reducing the dependence and special institutionalization;
– the need for special education measures is reduced;
– reduce of social costs.
To be effective early intervention services need to:
– be offered in the least restrictive environment and as natural as
possible (Brown, Benson McMullen & File, 2010;
– be family-centered and meet its needs;
– be guided by the empirical results obtained in working with the
child and his family;
– be individualized and adapted to child’s age and needs.
In ASD early intervention case management should be transdis-
ciplinary. The transdisciplinary model provides coordinated, inte-
grated, interventions to fulfill the needs of children with disabilities.
Transdisciplinary team is defined by the involvement of all members
in learning, teaching and working together to put into action inte-
grated services (Fewell, 1983, apud. King et al. 2009).
The transdisciplinary approach is characterized by the transfer
of roles between team members. All the roles in the therapeutic and
educational domains are conducted in a joint manner. All members
engage in each activity, sharing knowledge, findings, methods, and
experiences. Each team member participates in the decision-making
process, the boundaries between specializations are removed.
York et al. (1990: 73) state two specific elements of the transdisci-
plinary teams:
– A high degree of collaboration and joint decision-making among team
members (including parents) in conducting assessments, establishing
program priorities and designing and implementing individualized educa-
tional programs;
– Teaching the skills traditionally associated to one discipline to other team
members who function in direct service capacities and work directly with
learners throughout each day across a variety of environments and activi-
ties (role release).
King et al. (2009) listed three main characteristics of the transdis-
ciplinary model:
– The arena assessment: Each child is assessed together by all team mem-
bers, adopting both standardized and informal methods. One specialist
has the facilitator role, while others relate with the child and others ob-
serve and take notes. After assessment a meeting is conducted to change
information and interpretations.
– In-depth interaction between team members through the whole interven-
tion to share information, make decisions together and work collaboratively.
– Role release: “The team becomes truly transdisciplinary in practice when
members give up or “release” intervention strategies from their disci-
plines, under the supervision and support of team members whose disci-
plines are accountable for those practices. The role release process there-
fore involves sharing of expertise; valuing the perspectives, knowledge,
and skills of those from other disciplines; and trust-being able to “let go”
of one’s specific role when appropriate” (King et al., 2009: 213).
The transdisciplinary model is the best fit for early intervention
services for children in the spectrum. For them it is difficult to estab-
lish relation with a great number of people, that’s why it’s important
to deliver services with minimum number of specialists. However, the
children’s needs transcend one domain of intervention. The transdis-
ciplinary approach provides services in all domains but conducted
by a small number of specialists, through role release and sharing in-
formation. For the children on the spectrum the home environment
is the safest and comforting space for learning. Delivering services at
home help them to be emotionally reassured but also to learn new
skills directly in the daily living environment. It is the easiest learning
modality because it is no longer necessary for the new acquired skills
to be later transferred.
5. Case management in schools

Reaching the school age can be a difficult period for both the child
and the parents. New challenges and requirements stands in front of
the child’s development and the focus is put on social integration in
the school environment and in learning. Depending on the level of
functionality reached by this stage, the specialists together with the
family must decide of the best educational placement option: main-
stream inclusion or special education. For mainstream inclusion the
social and learning demands are more extensive and difficult to meet
so the child should master a necessary level of verbal communication
and social skills. But the child also has needs that cannot be meet in the
services provided by school and can participate to out-of-school ser-
vices (such as medical, nutritional, cultural). Therefore, an integrated

case management model is the best option for this stage (XXX, 2000).
An integrated case management approach provides the opportu-
nity for collaborative service delivery, an interdisciplinary joint effort
in managing the child’s in the spectrum complex needs. The model
offers direct supervision opportunities, the majority of case man-
agement control and guidance is provided face to face by a certified
specialist. In the integrated approach the services delivered prior to
entering school can be integrated and a continuity of support assured.
In the school context the needs of children’s in the spectrum can
include: curriculum planning, curricular adaptations, social interac-
tion support, social communication development, designing acces-
sibility, and support for adaptation to the school demands. Beside
them any child from the spectrum can have additional needs, such
as health needs (nutrition, life-style, medical), family needs (relation
with parents, siblings or extended family), behavioral and emotional
needs, and self-care needs. These can be addressed by specialists out-
side of school but should be integrated in the whole Individualized
Educational Plan (IEP) and services coordinated by the case manager
at school level.
Some of the children may prior have followed with success specific
therapeutic programs, such as ABA and need to continue it further.
ABA can be applied in the school setting with success, but specialists
certified in ABA must be provided by the school. ABA principles can
be applied to learning, new academic skills should be teach to become
instrumental for the child and capable to address complex problems
(Martens, Daly & Ardoin, 2015).
6. Case management in transition periods
Children in the spectrum may feel distress and anxiety to the un-
known or new situations. For them the transition periods are more
difficult than for others and in the process of case management we
should plan in advance to be prepared for them. Transition periods
include the shift from one activity to another, from one setting to an-
other, progression through grades and the transition to adult life.
The goal in planning the transitions is to develop coping skills that
best help the child to adapt and find resources to overcome obstacles
and maintain an emotional balance. These skills may include emotion
recognition, emotion management, help seeking, plan for structured
daily activities, keep time and track changes. Periods for adjustment
are necessary the child should be progressively introduced in the new
environment and routines. For example in kindergarten to school
transition a period of six month progressive adjustment is needed.
The child should be presented with the new learning environment,
the future teachers and if possible colleagues, taking preferred classes
one or two times per week in school, participate to extracurricular
activities. At the beginning extra support is needed to facilitate tran-
sition, in different degrees for each child, for some even a support
teacher is necessary. Parents play an important role in transitions be-
cause they should play the facilitator role between teachers and child.
They should meet in advance the case management team, discuss the
child’s needs, progress and routines and establish a bond.
The transition from school to adult life should be planned with
much time in advance because it implies career decision, residential
options, post-secondary education, and employment possibilities.
This decision should be a result of a collaboration process between
all case management team members, including parents and if possible
the child. The follow-up process conducted by the case management
school team can put the early foundation for the case management
over the life span. In adult life the person in the spectrum may collab-
orate and be supported by various residential and community institu-
tions, different providers of specific services and that make the case
management process more difficult. A multidisciplinary model is the
easiest to adopt, but still collaboration must be an important feature.
Conclusions
Children in the spectrum present various and complex needs that

can be meet only by a scientific and rigorous methodology, the case
management framework. There are several models for case manage-
ment: multidisciplinary, interdisciplinary and transdisciplinary. Each
has strengths and weaknesses, and is appropriate for certain levels of
development, functionality or type of skills that need to be mastered.
For early intervention the transdisciplinary approach is best suited
because provides the opportunity of learning in the natural environ-
ment and interact with fewer specialists. In school the interdisciplin-
ary model can be applied the easiest. The school provides specialists
in different intervention fields but also specialists trained to work in
the case management structure, and the suited environment for meet-
ings and sharing knowledge. In planning for transition to adult life a

multidisciplinary approach can be necessary because of the diversity
of providers and social domains that will be access by the person in
the spectrum (professional, residential, cultural, community). If the
level of autonomy and functionality by the end of school is not opti-
mum case management services for the life span should be provided
through community support services.
Through case management a high degree of autonomy, function-
ality and social integration is aimed. Qualitative and individualized
services should be planned throughout developmental stages for
achieving these goals. Planning for intervention should be an adapt-
able and flexible process that takes into consideration personal and
developmental specificity but also progress, stagnation or even regres-
sion phases. Perfect understandings of the child is the nodal point in
developing appropriate services and obtain success.
There is no standard intervention schema for children in the spec-
trum. The intervention planning is an evidence based and response
to intervention process, when over the results we select the most suc-
cessful methods, techniques and accommodation for each case. The
case management team, including the parents should demonstrate pa-
tience, perseverance, trust and more important unconditional love to
make the intervention not only efficient but also emotional significant
for the child.
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Assessing Children
with Autism Spectrum Disorder
Daniel Mara 1, Elena Lucia Mara1
1. Assessment of Autism Spectrum Disorder
The Autism Spectrum Disorder (ASD) is one of the most common

developmental disability after the intellectual disabilities and cerebral
palsy. The number of children affected by ASD is higher than those
with diabetes, cancer or AIDS altogether. TSA affects between 2 and
6/1,000 people. ASD is more common in boys than girls.
According to a recent Cambridge University study, 1 in 58 children
is affected by TSA in the UK. Autism is not conditioned by geolo-
cation, race, ethnicity or social class or cultural level of the family.
In Romania, by 2012, there were 7,179 people diagnosed with au-
tism (according to the Ministry of Health), but their actual number
is much higher, most of them not being officially registered. There is
no statistics on the number of people with autism (children, young
people, adults). It is estimated, according to international prevalence
(NIMH, USA), that there are over 30000 children affected by ASD.
According to the criteria outlined in the the Diagnostic and Statisti-
cal Manual prepared by the American Psychiatric Association (last re-
vised in 2000 and known as DSM-IV-TR™) and the the International
Classification of Diseases, prepared by the World Health Organization
(currently in its tenth edition and known as ICD-10), to be diagnosed
with autism, a child shold have atypical behaviors in social interaction
or language as used in social communication, or symbolic/imaginative
play at the age of 3 years. One child could not have all of the mean-
ing criteria for autism, he or she may be appropiate with diagnosis of
Asperger syndrome (AS) or Pervasive Developmental Disorder-Not
Otherwise Specified (PDD-NOS). Moreover, lately the concept of an
autistic syndrome has been developed in order to permit a spectrum – a
1
“Lucian Blaga” University of Sibiu.
number of disorders reflecting some different patterns of symptoms,

and collectively known as autism spectrum disorders. (www.birming-
hambeheard.org.uk).
The evaluation of the children is a complex process through which
the collection of the essential information is pursued in creating a real
profile that allows the transition to the next stage, that of designing
the future intervention actions. Not being, by yet, a biological analysis
for ASD, a diagnosis of ASD is done considering only behavioral pro-
file, as the absence or a presence of atypical behaviors.
The terms autism and autism spectrum disorders (ASDs for short) it
may occur during this chapter, as a definition of this spectrum, about
the meaning of the autistic syndrome, this will be referred to as classic
autism; the terminology relevant to other sub-types of ASD will be
introduced as necessary.
This so-called triad consists of impairments in:
– reciprocal social interaction;
– reciprocal communication;
– scope and range of activities and interests.
It is a fact that males are more likely to be affected by ASDs than
females: one quorter for for classic autism and one tenth for ‘milder’
conditions within the spectrum.
The diagnostic criteria currently used are primarily the result of
Creak (1961), Rutter (1978) and Wing (1979, 1993). All Diagnostic
Systems (ICD 10 - International Disease Classification developed by
the World Health Organization and DSM IV-TR - Manual of Diagno-
sis and Statistics of Mental Disorders, 4th edition, revised text, 2000,
developed by the American Psychiatric Association include the Per-
vasive Developmental Disorders category, which includes 5 diagno-
ses: Autistic Disorder, Asperger Syndrome, Rett Syndrome, Disinte-
grative Childhood Disorder, and Pervasive Developmental Disorder
- Non-Specific / PDD-NOS. All are characterized by impairment of
communication capacity and social interactions, as well as repetitive
and stereotyped behaviours. These qualitative interferences charac-
terize the affected person deeply, manifesting to varying degrees in
all life situations. They may appear from the youngest child until the
age of five, and never resign. By specialized intervention it can be sig-
nificantly improved. Sometimes, people with autism are classified as
“low-functioning” and “high-functioning”, the latter having no asso-
ciated mental retardation. There are many similarities between people
with autism with good functionality and Asperger syndrome.
Assessing Children with Autism Spectrum Disorder 61
“Autistic spectrum” (also called “autistic continuum”) refers to

the conception that autistic disorders would not differ qualitatively,
but only quantitatively (the degree of severity of the disorder) that
includes “autistic features”, the broader autistic phenotype. Pervasive
developmental disorders are characterized by severe and pervasive
deterioration in various areas of development: mutual social interac-
tion skills, communication skills or the presence of behaviour, inter-
ests and stereotypical activities. The qualitative damages that define
these conditions are clearly deviant in relation to the level of develop-
ment or mental age of the individual. Childhood autism is by far the
most common pervasive developmental disorder. It implies a marked
alteration and persistence over time of social interaction, communica-
tion, behaviour and restrictive or stereotyped interests. These symp-
toms must be present before the age of three. Approximately 70% of
affected children have different degrees of mental retardation, this
being the most common comorbidity cause.
National Autistic Society

Figure 1. The triad of impairments in ASDs
(http://www.open.edu/openlearn/health-sports-psychology/psychology/
the-autistic-spectrum-theory-practice/content-section-0)
Autism spectrum disorders are recommended to be diagnosed by

multidisciplinary teams (psychiatrist, clinician psychiatrist, paediatri-
cian, speech therapist, psycho-pedagogue / special education teacher,
social assistant) using validated diagnostic tools: questionnaires, in-
terviews, observation scales. The evaluation involves assessing the
individual’s behaviour and cognition in the three areas of interest.
Regarding social interaction, the clinician needs to evaluate the use
of non-verbal behaviour in interaction with others. There may be de-
ficiencies in the use of visual contact, facial expression, gestures or
other non-verbal behaviours in interaction with other people. A lack
of development of human relationships is often present and may re-
sult from total disinterest in socialization or from the lack of the nec-
essary socialization skills. Many people with autism do not share their
enthusiasm, interests or accomplishments with others.
In contrast to typically developing children, children diagnosed
with ASD, and some children even prior to receiving such diagnoses,
experience difficulties in achieving milestones and displaying behav-
iors easily achieved by their typically developing peers. A major area
of these difficulties is social: The social behavior of children, adoles-
cents, and adults with ASD differs qualitatively from that of their typ-
ically developing agemates. Indeed, impairments in social behavior
constitute one of the three general areas of impairments required for
an ASD diagnosis:
– retrospective investigations, such as retrospective parental inter-
views or the investigation of home movies videotaped during the
first year of life (or soon after) of children who later receive an ASD
diagnosis;
– studies of infants who are at risk for ASD.
The second largest area evaluated by the clinician is communica-
tion. Typically, there is a delay or a lack of language development. I
can lead others to the desired things, but usually do not compensate
for the lack of language, through alternative forms of communica-
tion, such as the use of gestures. Some people have the echolalia (im-
mediate or delayed imitation of heard phrases or repetition of words
or phrases that do not have a communicative function, Allen, 1988).
Some acquire a significant amount of words, but lack the necessary
skills to initiate or sustain a social conversation. Typically, there is a
lack of spontaneity in the game or an imitative game deficit, and when
the skills of the game are present, it tends to be solitary, repetitive.
The third area is represented by the behavioural patterns, interests
and activities of the person with autism. They usually have a repertoire
of relatively limited interests and activities, characterized by repet-
itive behaviours and routine attachment. Some show a concern for
one or more repetitive behaviours such as aligning objects, collecting
unnecessary objects, or having an unusual interest in certain objects,
such as trains or elevators. The child can become very angry if there
is a sudden change in daily activity, if he is staying in other banks at
school or if a piece of furniture is moved. People with autism have
repetitive movements of the body, commonly called “stereotypes” or
“self-stimulation” behaviours. These include, but are not limited to,
finger and hand movements, body postures, creeping, shaking and
other manners. These people may experience abnormal attachments
to different objects (e.g. a wooden spoon) and / or concerns about
objects or parts of objects (clown fascination).
2. Evaluation tools
A mandatory recommendation in assessing the communicative abil-

ities of children with ASD is the selection of investigation tools, which
contributes to the outline of a specific profile. On the other hand,
the persons involved in the evaluation of children with ASD must
take into account the typology of the approach, such as the traditional
ones of assessment, which are oriented in particular on the form and
structure of the language, while the modern ones of assessment can
determine the stage of development of communication skills.
Autism spectrum disorders is characterized by patterns of atypi-
cal behaviours and development and that is why it is very complex
process of assesment. In the Diagnostic and Statistical Manual of Men-
tal Disorders (DSM-IV-TR; American Psychiatric Association, 2000)
we found a decription of symptom profile, related criteria through
observation, checklists and standardized tests. A comprehensive as-
sessment is more than an application of a diagnostic criteria, it has to
provide an overview of child’s history (life, socialization, enviroment),
also combined to assets, liabilities and needs. A comprehensive assess-
ment for ASD thus typically evaluates a child’s total functioning-in-
tellectual, neuropsychological, communicative, behavioral, and emo-
tional problems. The evaluation of the children is a complex process
through which the collection of the essential information is pursued in
creating a real profile that allows the transition to the next stage, that
of designing the future intervention actions.
The Autism Diagnostic Interview (ADI) can determine the pres-

ence of autism in children above the age of 2. It is a standardized,
semi-structured interview for carers and adults with autism. The whole
interview takes about 90 minutes. It consists of a diagnostic algorithm
outlining the DSM-IV or ICD-10 criteria and provides a structure
for questions and the interpretation of responses. The instrument fo-
cuses on behavior in three main areas: qualities of reciprocal social
interaction; communication and language; and restricted and repet-
itive, stereotyped interests and behaviors. The ADI-R is appropriate
for children and adults with mental ages from about 18 months and
above. The interview is focussed on 93 items and want to stressed on
behaviors in three points: social interaction; area of communication
and language and behavior.
The stage of psycho-pedagogical evaluation of people with autism
spectrum disorders represents an important stage for the intervention
program to be designed and implemented by specialists. As in all such
initiatives, the collaboration between the specialists involved in the
interdisciplinary team is essential.
The Autism Diagnostic Observation Scales (ADOS) is a tool who per-
mitt analysing communication, social interaction, or imaginative play
in children and adolescents. The time of an exam is about 20 minutes.
It made “targeted” social situations where the likelihood of a certain
behaviour is high. Activities are structured as materials, interactions
are less structured. There are 4 tests, depending on the level of devel-
opment and the child’s linguistic expression. Expressive verbal skills
should be at least 3 years old for a clinician prepared in this tool to be
able to assess the child’s social behaviour and functionality. The child
assesed needs to ask for help, to demonstrate how to do something,
to tell a story, to play with toys or to have a conversation. The Autism
Diagnosis Observation Program (ADOS) is an evaluation mode that
targets socialization, communication and play and it is dedicated to
children suspected of autism or other disorders in the same spectrum.
The program contains four parts, each is adapted to different levels of
communication and language development, including verbal and non
-verbal language. ADOS allows the observer to detect the existence or
non-existence of behaviors that can lead to the identification of certain
developmental disorders, focusing on the specific expressiveness of the
language. As an efficiency, ADOS is conducted over a period of 30-
45 minutes in which the observer creates different contexts that can
ensure the determination of a certain type of behavior (Murray, 1938)
(https://research.agre.org/program/aboutados.cfm).
ADOS is published by Western Psychological Services (WPS) in

2000 and now available in 15 different languages. Experiences proof
that it is one of the most important diagnostic tools used in both area,
education and health care screening for developmental disabilities.
The latest edition of the Diagnostic and Statistical Manual of Mental
Disorders (DSM-5) focuses on the criteria that can be used by any
specialist in diagnosing, meaning direct observation in some situa-
tions, in order not to be different opinions. Here’s what you need to
know about the process. ADOS consists of four different modules.
(www.juniorleagueofgreensboro.org).
Tests are created to have application at any age:
– Test 1 - using only nonverbal situations for those who do not have
communication skills.
– Test 2 - using minimal verbal communication skills, in known situa-
tions.
– Test 3 - using verbally fluent and capable of playing with known toys.
– Test 4 - using verbally fluent and capable of playing any with toys.
ADOS is constantly being refined and studied to make it more ac-

curate and useful. The test is on its second major revision and further
studies are ongoing. (https://www.appliedbehavioranalysisedu.org/
how-is-ados-autism-diagnostic-observation-schedule-used-to-identi-
fy-asd/).
If a screener indicates that a child may have autism spectrum disor-
der, the child should receive a comprehensive evaluation from some-
one trained in diagnosing autism. This evaluation will often begin with
a diagnostic instrument such as the Autism Diagnostic Observation
Schedule, or the ADOS-2. The ADOS is a test with different modules
to accommodate a range of children. There is a version for toddlers
that is play-based. For kids older than thirty months, there are modules
that include more conversation, according to the child’s language level.
This isn’t the kind of test where there are right answers. The purpose
of the ADOS is to evaluate the social skills and repetitive behaviors
the child displays during the test. This means the evaluator is paying
attention to things like if the child asks for help when he needs it, gives
other people a chance to speak, and follows along with changes of
subject. The Communication and Symbolic Behavior Scales (CSBS) is
another good diagnostic instrument for toddlers and young children.
This play-based instrument is also backed by research, but is used less
than the ADOS, which covers a broader age range.
Dr. Epstein notes that even with these tools it is important to be

working with a mental health professional who has experience diag-
nosing people on the autism spectrum. “You want to be working with
someone who understands the subtleties,” she says. “For example, a
person who has real expertise will be able to distinguish if a child has
poor eye contact because the child is shy, versus if there is poor eye
contact in the way we expect to see it in an autism spectrum disor-
der.” A recent study underscores the difficulty in distinguishing be-
tween autism and other disorders, like ADHD, using even gold-stan-
dard tools like ADOS. Looking at school age kids with high verbal
functioning, the study found that found that 21% of children with
ADHD-but not autism-met diagnostic criteria for autism when given
the ADOS. “The minute that we diagnose blindly based on score,
we’re going to misplace a lot of kids into categories”, lead researcher
Somer Bishop, assistant professor of psychiatry at the University of
California, San Francisco, tells Spectrum, an online journal on autism
research. “These instruments were designed to assist in clinical de-
cision-making, but they are not a replacement for a clinical brain.”
Adds Catherine Lord, director of the Center for Autism and the De-
veloping Brain at New York-Presbyterian Hospital, who developed
the ADOS, it’s important to consider the motivation for the behavior.
A child with ADHD might avoid an adult’s gaze because he thinks he
has done something wrong, she tells Spectrum, rather than because of
a social deficit. Or, a child’s face might be unexpressive because she
is bored or distracted, not because she is less expressive in general.
Screeners and diagnostic tools are ways of gathering information,
but they have to be considered in the context of other information
from a range of adults who know the child. A full evaluation should
also include a thorough interview with the child’s parents that covers
general development and current concerns. The interview will also
closely investigate ASD-related symptoms. To gather more informa-
tion, parents might be asked to fill out special questionnaires as well.
The Autism Diagnostic Interview, Revised (or ADI-R) is one such
interview, and is often paired with the ADOS. However the ADI-R
takes two hours to provide, making it difficult to use in clinical assess-
ments, Dr. Epstein notes. An interview based on the ADI-R or a par-
ent checklist, such as the Social Communication Questionnaire, can
also be effective if it is led by a clinician trained in diagnosing autism.
Dr. Epstein explains that it is important to include early developmen-
tal information during the interview, because there are many circum-
stances where symptoms are more obvious earlier, say at around four
years of age, but diminish as the child grows. “If you aren’t attending
to that early development and you have an eight or ten year old, for
example, you’re going to risk really missing out,” she warns. Having
that information about early development can help the provider make
a more accurate diagnosis. If the child is of school age, it is also helpful
if the practitioner can speak to the child’s teacher to get their point
of view, too. A school visit to observe the child would be “absolutely
ideal,” says Dr. Epstein, but not always possible. A conversation with
the teacher, or having the teacher fill out a questionnaire, will give
the person doing the evaluation some insight into what the teacher is
seeing firsthand at school, which may be different from what parents
are seeing at home.
An assessment should also include some amount of cognitive test-
ing. One reason for this is that cognitive testing gives the person do-
ing the assessment another chance to examine the child’s behavior,
but this time under different circumstances. The ADOS is a socially
loaded test that is also less structured, which might be difficult for
some kids. Dr. Epstein explains that some kids will do better dur-
ing a more structured cognitive test when they are answering specific
questions. “Or maybe they will get upset during the cognitive testing
if they don’t know the answer to a particular question, and they might
have a tantrum,” says Dr. Epstein. All of this information is helpful for
the person doing the evaluation. The cognitive testing is also impor-
tant because you want to learn more about how the child thinks – for
example you want to learn more about how the child organizes and
plans, or solves problems. Beyond helping the evaluator in making
an accurate diagnosis, Dr. Epstein explains, “If you don’t know their
strengths and weaknesses, you can’t really contribute meaningfully to
building an educational program for them at school. You want to be
able to say, ‘He can do this; he can’t do that; this is what he needs to
be able to do that’ (http://www.nesca-news.com/2016/05/?m=0).
In addition to the medical evaluation, it is recommended to col-
laborate with specialists with experience and expertise in diagnosing
children on the autism spectrum. Parents can communicate and re-
late constructively with these specialists by conducting discussions
focused on the child’s issues.
It was developed by Schopler, Reichler, DeVellis & Daly (1980)
and the internal consistency of the scale seems appropriate to be con-
sidered a valid measure.
Diagnostic steps:
– determination of the cognitive level (nonverbal and verbal);

– determination of the language use ability;
– establishing behavioural correspondence with: chronological age,
mental age, language age;
– establish specific problems of social skills, play, communication;
– identification of medical conditions;
– establish other relevant psychosocial factors.
There are many tools for evaluating autism. One of them is the
Childhood Autism Assessment Scale (CARS). CARS was developed
by Eric Schopler, Robert Reichier and Barbara Rochen Renner. It was
designed to diagnose autism in children. The tool offers the opportu-
nity to differentiate autism from other developmental delay disorders,
such as mental retardation. CARS allows the evaluation of the child’s
behavior, characteristics and abilities.
Autism Spectrum Rating Scale (ASRS) is a set of scales built to mea-
sure behaviours associated with Autistic Spectrum Disorders occur-
ring in children and teenagers aged between 2 to 12 years. These as-
sessments are done either by parents or by educators, teachers, or by
all of them. ASRS is an aid instrument for:
– establishing the diagnosis;
– planning of treatment;
– monitoring the response to the intervention;
– evaluating the program in which the person with Autism Spectrum
Disorder was included.
ASRS contains items related to Classical Autistic Disorder, Asper-
ger Disorder, and Pervasive Developmental Disorder without any
other specification. Due to the low rate of Rett Disorder and Child
Disorder, as well as due to the specific nature of their symptoms,
ASRS does not contain special items for these disorders and is not
addressed to them. These disorders are usually diagnosed on the basis
of direct observations and child history research by specialists. ASRS
for children aged 6-12 is a questionnaire comprising of 71 items de-
scribing present behaviours of the evaluated child. ASRS is built to
provide information on the current / recent child’s operation. When
completing the ASRS, the assessor should consider the behaviour ob-
served with the child over the last four weeks. Because they rely solely
on the behaviours observed over the last four weeks, responses allow
the awareness of changes in the child’s behaviour over time to help
monitor the outcome of the intervention and evaluate the intervention
program in which the child was introduced.
The use of this four-week time interval requires that the assessor
know the child for at least a month and have had enough opportu-
nities to observe the child’s behaviour. While the recognition of Au-
tistic Spectrum Disorders has increased, the risk of underdiagnoses
or over-diagnosis did too. Thus, the need for a tool to be built with
care and whose results can be trusted has become essential. ASRS has
been developed to meet this need. ASRS is not intended to be the only
method used to establish a diagnosis, assess children or plan treat-
ment. Evaluators are warned about making unverified interpretations.
To get the most complete picture of the rated person, we recommend
that this tool be interpreted by a specialist. It will corroborate the in-
formation provided by ASRS scores with information obtained from
the application of other professional tools, as well as those obtained
through interviews and discussions with the child, but also with other
people who have information about it. There are scales that measure
the most common behaviours associated with autistic Spectrum Dis-
orders for children aged 6 to 12: Social/Communication, Unusual Be-
haviours and Self-Regulation. The total ASRS score is the most com-
prehensive score for the existence of ASD in a child. It is the average
of the three ASRS scales. Even if this score is useful globally, it is
necessary to interpret each of the scales individually in order to have
a complete picture of the evaluated child.
3. The stages of the diagnostic process

The first step in a diagnostic process in general is to collect infor-
mation about the child through a detailed clinical history, after which
appropriate tests, questionnaires and tests can be applied. In the case
of small children, it is recommended to join them together with their
parents, to observe all aspects of the child’s relationship with them,
the toys, the need to initiate activities and games with others, and the
reaction when parents are separated reference to the first years of life.
In the evaluation process in children with a good level of function-
ing is very important to evaluate them and their parents separately,
following a meeting of both groups.
The following areas will be analyzed:
1. Personal data.
2. Reason for evaluation.
3. Familiar and educational context (family situation, educational
situation).
4. History and dates of previous investigation (family history, preg-

nancy and childbirth, medical interventions, psycho-motor devel-
opment).
5. Evaluation of current development (general description of obser-
ved behaviour: social development, motor, language, level of co-
gnitive and emotional development).
All this information can be obtained by applying questionnaires
and psychological tests, thus establishing an index of cognitive capac-
ity, abilities of expressive and receptive language, etc. These include
additional tests (useful but not essential in establishing the diagnosis)
such as: Theories of the Mind, Functional Tests, and Psycho-Motor
Development Tests. A tranquil environment and richness of details,
as well as video recordings provided by parents, are important for a
good development of the diagnostic process. There are also funda-
mental and relevant elements for establishing a differential diagnosis
such as: the age of the child when parents start to worry about, the
way in which language, as well as the child’s communication inten-
tions. It is recommended to consider that the symptoms of Asperger’s
Disorder are seen at a more advanced age due to a seemingly normal
linguistic development at an early age. It is recommended to observe
the three fundamental features defining the Autistic Spectrum Disor-
der described by Wing, L. & Gould, J. in 1979: social level difficul-
ties, language and communication difficulties, stereotypes and limited
interests. There are children with autism who do not anticipate in the
first months of life the desire of parents to take them in their arms
and, as a result, they do not raise their hands or change their posi-
tion to help them, do not embrace their parents maintaining a rigid
position. As the visual contact can be observed, it is not used to at-
tract the attention of parents to objects of interest to the child. Some
can make inappropriate social approximations without discriminating
the presence of strangers from familiar ones. It can be noticed the
lack of interest in dealing with children of the same age, including
the absence of consciousness about their existence. Older children
with a different level of development do not understand the concept
of friendship and can be the target of classmates’ jokes. When they
are young they do not participate in social games involving emotional
exchange with their parents. In general, they tend to play alone by
observing the absence of functional and symbolic play in favour of re-
petitive and stereotype play (opening and closing the door, repeatedly
turning the light on and off, observing toys from different positions,
etc.). On the other hand, the communication difficulties that can be

observed in Autism Spectrum Disorder are much more complex than
those that require a simple speech delay and may share characteristics
with the deficiencies observed in the evolutionary language disorder
or the specific language disorder (Allen and Rapin, 1992). A scale can
be observed that can start from total mutism reaching up to a fluid
language though accompanied by semantic (word meaning) and prag-
matic (communicative language use). Also, in most cases, there is a
lack of understanding. For example, children with autism do not an-
swer when they hear their own name.
When they are young they are described as very quiet babies, who
do not babble and develop no verbal language. In other cases, parents
speak of normal development until about 12-18 months of age, after
which they notice a regression in the appearance of speech and the
tendency of the child to isolate itself, which is why they asks for his
evaluation. In the absence of language, there is a tendency in many
cases to obtain the desired objects by pulling the hand of the parents,
signalling the object by pushing the parent’s hand towards it, without
using any kind of vocalization or visual contact with them. If there is a
fluid speech there is the impossibility to converse, understood in terms
of the communication process established between two interlocutors.
These children are accustomed to capturing conversation with stereo-
typed themes that an interlocutor has no interest into them. It is also
possible to observe the presence of immediate ecolalysis (the tendency
to repeat in the absence of comprehension a word or linguistic expres-
sion that he just heard) or the presence of the same type of repetition,
but after hours, days or even weeks (eclipses delayed). Referring to ste-
reotypical interests, we mention the children’s tendency to repeat the
same activity endlessly, upsetting at the moment they are interrupted.
In the case of children with speaking abilities, attention is drawn by the
tendency to ask the same thing in a repetitive form, as they know the
answer, or to display fascination for the same field of interest like dino-
saurs, cemeteries, airports, etc. (in the case of Asperger’s Syndrome).
There is also a desire to keep the order of objects in the house or to
wear clothes of the same colour, to eat only a certain type of food, to
go to school on the same road, to keep the family routine unchanged.
They can experience stereotypical body movements such as “hands-
on” when they are nervous or running side-to-side without interrup-
tion, keeping a strange posture and walking on peaks etc. Others may
experience fascination with certain objects such as ropes, electric ca-
bles, doing repetitive and oscillating movements with them.
Conclusions and recommendations
According to the “Romanian Autism Study” made by e Romanian

Angel Appeal Foundation, regarding the chances of recovery and inte-
gration, it is mentioned that early diagnosis and therapeutic intervention
increase the chances of recovery of people with autism. Almost 50% of
those surveyed believe that the social integration of people with autism
is the best solution for supporting the recovery therapy, but the lack of
information about the condition affects them in direct interaction with
people with autism. As with all people with special educational needs
and with people with autism, there is a need for an individualized ap-
proach that involves adapting the evaluation tools, but especially those
of intervention to the specific particularities of each one. The paradigm
of the pedagogy of the differentiated approach highlights the resources,
the potential of the persons with CES, who can obtain improved results
at the level of many dimensions of their personality. The Autism is still
an enigma since, despite all the research done so far in this field, the
causes are still unknown. The results obtained following the implemen-
tation of the individualized service plans led to significant conclusions
on how to intervene and rehabilitate children with mental retardation
and autism. The child with these types of deficiencies should be in-
cluded in an intervention program at an early age, this work can help
the child with autism develop to its full potential. Therapy should start
as early as possible and take place regularly, on a regular basis.
Of all the problems that this syndrome generates, there is often a
tendency to pay more attention to communication and language prob-
lems as well as to those related to behavior, but we consider that it
is necessary to pay equal attention to all these aspects because they
influence each other and it is preferable to be improved or recovered
through a complex intervention program that targets therapeutic and
compensatory activities for all aspects of personal development.
The main objective should be to general progress of the child’s
reaction and action. Autism characteristics can be manifested in dif-
ferent ways and vary in severity. Also, changes in the behavioral evo-
lution of the same person can be registered. Thus, the intervention
programs must be adapted to the needs of each person.
Generally, children with autism best respond to well-structured
interventions which, although different in content, retain a pattern, a
basic structure, inducing a certain routine. Any communication skills
developed during the educational activity should be generalized ac-
cording to the vary situations in which the child is engaged.
A well-structured therapeutic program, based on the child’s prac-

tical experiences, which includes behavioral modeling strategies and
cognitive stimulation, helps children with associated deficiencies im-
prove their communication, behavior, social skills, adaptability and
learning skills, being efficient if it is practiced and continued at home.
I considered that it is necessary a structured presentation of the prob-
lems which generate this syndrome both at the individual level as well
as at the family level, because the number of diagnosed children with
autistic syndrome is alarmingly increased and the impact of taking
care of a child with autism over the family can be devastating.
Thus, another aspect that should be emphasized is the strength-
ening of the parent-specialist relationship, because the stronger the
relationship, the more the child will have to gain. The problems that
can be most difficult to alleviate are the stereotypes, because children
get certain self-stimulating sensations through which they do not have
doing other activities, and in these conditions, first, those creative and
constructive activities must be found with which can be replacing
the stereotypes, regardless of their nature. The approach based on
learning theory, on operative conditioning, on the use of rewards after
each success, proved to be effective in this respect. Even if there are a
many techniques, methods, and intervention strategies applicable to
children with autism, the best way to intervene is to combine them in
proportions dictated by the child’s personal characteristics.
References
American Psychiatric Association (2000). Diagnostic and statistical manual of
mental disorders DSM-IV-TR™ (4th edn), APA, Washington, DC.
Asperger, H. (1944). Autistic psychopathy in childhood, translated in U. Frith
(ed., 1999).
Handleman, J.S. & Harris, S. (2000, Eds.). Preschool education programs for
children with autism (2nd ed). PRO-ED, Austin (TX).
Harris, S.L. & Handleman, J.S. (2000). Age and IQ at intake as predictors of
placement for young children with autism: A four- to six-year follow-up.
Journal of Autism and Developmental Disorders, 30, 137-142.
Wing, L. & Gould, J. (1979). Severe impairments of social interaction and as-
sociated abnormalities in children: epidemiology and classification. Journal
of autism and developmental disorders, vol. 9, 11-29.
www.birminghambeheard.org.uk
https://research.agre.org/program/aboutados.cfm
www.juniorleagueofgreensboro.org
https://www.appliedbehavioranalysisedu.org/how-is-ados-autism-diagnos-
tic-observation-schedule-used-to-identify-asd/
http://www.nesca-news.com/2016/05/?m=0
Treatment fads and autism
spectrum disorder
Jasmina Stošić 1, Matea Begić1, Ana Wagner Jakab1
1. Introduction
Fad (https://dictionary.cambridge.org/dictionary/english/fad) is a
noun that means style, activity, or interest that is very popular for
a short period of time. Fad treatments are usually closely related to
pseudoscience. The term “pseudoscience” describes theories and
practices that seem to be logical and based on empirical research but
without significant scientific support. Pseudoscientific practices can
be potentially harmful and dangerous. Some of them promises and
promote cure for patients with serious medical diagnoses.
Autism is a “magnet” for treatment fads (Lilienfeld et al., 2014).
One review showed a list of over 50 scientifically unsupported or
poorly supported interventions for autism (Lilienfeld et al., 2014).
Many parents of children with ASD seek and find from 4 to 7 in-
terventions in the same period (Green et al., 2006; Schreck, 2014,
Lilienfeld et al., 2014).
Fad treatments also use scientific jargon and sound logical. Many
are supported by celebrities and are promoted and discussed in me-
dia, especially internet, and therefore become accessible to public as
well as parents. Fad treatments are also not scientifically proved as
being effective in treating autism (Zane, Davis & Rosswurm, 2008).
Furthermore, people believe in pseudoscience because they like pat-
terns and look for evidence that confirm a theory while ignoring the
evidence that disapprove it.
Parents of children with ASD are particularly vulnerable group when
it comes to pseudoscience and fad treatments. After getting a diagnosis
for their child parents are overwhelmed with fear. Sometimes they start
with the grieving process and in stage two some parents may deny their
1
University of Zagreb.
child’s disability or try to avoid that reality in some other way. Some
parents will try to take action as an attempt to change the reality. Some
may “shop for a cure” or try to bargain for a different reality (Healy,
1996). From the clinical experience of the authors, parents are told a lot
of terrifying facts like autism is a lifelong condition that affects almost
all areas of functioning and require substantial and life long support.
Parents also connect autism with a lot of bad expressions they heard
about it such as: “tragedy”, “divorce”, “destruction of family”, “epi-
demic”. This can cause fear about child’s future and have consequences
on child’s life, the life of their other children, relation with partner, sus-
tainability of their family and their own future. In that situation parents
can agree to different questionable treatments. Pseudoscience state-
ments are usually made in a way that can be applied to everybody. They
also use descriptions, examples, experiences and illustration that are
comprehensive, and everybody can find themselves in them. On the
other hand scientific statements are often made in the way that it is too
complex for parents to understand and critically analyse the results. In
such materials there is not enough real life descriptions and they are
also not available to average parent who is not academically educated.
One study has shown that 86% of parents of children with ASD search
the websites in finding autism treatments and only 44% consult journal
articles (Mackintoch, Myers & Goin-Kochel, 2005).
For parents, it is easier to believe and raise hope when parents are
listening ordinary, available people who are telling them their life sto-
ries and sharing with them their struggles and also giving them some
theoretical basis that seem to have sense and it is communicated in
more or less everyday language. Some professionals also don’t know
how to read and understand articles from academic journals. Unfor-
tunately, some professionals have scientific training but choose to ig-
nore it for professional and financial profit (Foxx, 2010). Researchers
and practitioners sometimes assume that some new treatment that
was proved to be ineffective will be immediately abandoned, but that
is often not true. Ineffective techniques may persist long after they
have been debunked (Lilienfeld et al., 2014; Paynter et al., 2019). It
can also happen that some behaviors of ASD (aggression, nonverbal
communication, attention) raise and fall over brief period of time.
Parents but also professionals can attribute those improvements to
fad treatments rather then to for example maturation of child (Ro-
mancyck et al., 2003; Lilienfeld et al., 2014).
Zane, Davis & Rosswurm (2008) state that fads provide several
threats for parents. They cost parents emotionally but also financially.
Treatment fads and autism spectrum disorder 77
Child with autism is wasting precious time in therapies that are not
giving results. The worse is false hope that fad treatments give to fam-
ilies that are strongly emotionally involved in anything that has any
chance to help their child (Zane, Davis & Rosswurm, 2008).
In Croatia, there are some very popular treatments for autism spec-
trum disorders, sensory integration therapy, neurofeedback and To-
matis therapy.
Each of these treatments will be presented and their scientific evi-
dence will be discussed in the following section
2. Sensory integration therapy
Sensory integration was first introduced by Ayres (1978). She de-

fined it as a neurological process for organization of senses from the
body and the environment that enables a person to adjust the be-
haviour and reactions. Sensory integration is claimed to be the pre-
requisite for high – level cognitive functioning (Lane, 2002). It is
recognized in Diagnostic and Statistical Manual of Mental Disorders
5 (DSM 5) that persons with autism spectrum disorders have differ-
ent reactions to sensory input, they can be hyper or hyporeactive to
sensory input or have unusual interests in sensory aspects of the en-
vironment (APA, 2013). Many authors have used the term sensory
integration disfunction to describe the difficulties with sensory pro-
cessing of children with different developmental disabilities (Kim-
ball, 1993; Mulligan, 1998; Stock-Kranowitz, 1998). That dysfunction
can affect integration of vestibular, visual, auditory, proprioceptive
and tactile system. Since those difficulties exist, sensory integration
therapy has been developed. It is a clinic-based approach which uses
sensory – motor activities through the therapist – child relationship
to enhance processing and sensory integration of affected systems.
Parham, Chon, Spitzer and Koomar (2007) have described the key
components of sensory integration therapy that include:
1. Structural preparation – rooms with sensory equipment, space for
exploration and educated professional.
2. Process of intervention – providing sensory opportunities, provi-
ding just right challenges, collaborating on activity choice, guiding
self – organization, supporting optimal arousal, creating play con-
text, maximizing child’s success, ensuring physical safety, arran-
ging room to engage a child, fostering therapeutic alliance.
Sensory integration therapy is usually provided by occupational

therapists although other professionals are also using it. It is usually
conducted 2 to 3 times a week for 45 minutes or 1 hour in specially
equipped rooms.
Ayers claims (1978) that sensory integration therapy can build a
foundation on which the brain can work better. In theory, concepts
of sensory integration are created on well – established neurological
functions and structures. It has very extensive theoretical framework.
However, a major limitation of sensory integration is the concept that
sensory integration is a prerequisite of higher cognitive abilities which
has no scientific basis. The fact is that functional organization of the
nervous system acts as “co – occurring and interactive network of cor-
tical and subcortical systems that mediate voluntary and involuntary
responses to stimuli” (Smith, Mruzek & Mazingo, 2016: 248).
Sensory integration therapy is one of the most widely used treat-
ment for children with autism spectrum disorder. The experience of
the authors is that it is the only treatment to which most of ASD chil-
dren have access to and it is also always available in state funded pro-
grams. However, till this moment there are no solid evidence about
the effectiveness of the treatment nor all the available treatments that
are called sensory integration therapy follow similar procedures. Nu-
merous reviews have been conducted by different authors that used
different criteria to evaluate the quality of the study and presented
results. Lang and colleagues (2012) have analyzed 25 studies. Of those
25 studies, 3 concluded that SIT was effective, 8 studies had mixed
results and 14 studies reported no benefit for children with ASD. Au-
thors have also analyzed the quality of methodology of the studies
and concluded that many of reviewed studies, including all 3 of those
that reported positive effect had serious methodological flaws. In the
conclusion they state that SIT is not evidence-based approach for
children with ASD.
In another review by Case-Smith, Weaver & Fristad (2015) 19
studies were reviewed. Interventions were divided in two groups, sen-
sory integration therapy and sensory – based intervention. Sensory
integration therapy was described as clinic-based intervention that
uses enrichment of the environment and chid directed activities to
improve child’s responses to sensory stimuli. Sensory based interven-
tions where considered ones that used single sensory strategies in the
classroom, like weighted west. Authors have reviewed 5 studies with
sensory integration therapy and 14 with sensory – based intervention.
They have concluded that 2 randomized controlled trials have found
positive effects, and that the other studies had methodological lim-
itations. Two randomized controlled trials that were mentioned were
Schaaf et al. (2014) and Pfeiffer et al. (2011). Those are the only ran-
domized controlled studies of SIT that will be reviewed here in more
details. Schaaf et al (2014) have enrolled 32 children in their study.
There were 17 children receiving SIT and usual treatment and 15
children receiving only the usual treatment. The experimental group
that received SIT has acquired higher results in individualized goals,
caregiver assistance in self-care and socialization according to their
parents. In Pfeiffer et al study (2011) there were 37 participants. 20
children have received SIT intervention and 17 have received fine mo-
tor intervention. Participants in SIT have acquired higher results on
individual intervention goals and there was a significant decrease in
autism mannerisms. However, there were no differences in adaptive
behavior, social responsiveness or surprisingly, in sensory processing
measures. It is important to mention that studies have used paren-
tal reports and mostly not direct measurements, and in Pfeiffer et al
study (2011) there were no changes in primary target of SIT, sensory
processing. Both studies have included treatment fidelity measures
introduced by Parham et al. (2007). Analyzing the description of
components of intervention “allowing the child to actively exert some
control over activity”, “arranges the room and equipment in the room
to motivate the child to choose and engage in an activity”, “facilitates
or expands on social, motor, imaginative, or object play”, “making
changes to environment or activity to support the child’s attention,
engagement, and comfort” (Parham, 2011: 219). All those procedures
can be found in other intervention packages like for example inci-
dental teaching or pivotal response training (Koegel, Carter & Koe-
gel, 2003; McGee & Daly, 2007). Therefore, if the positive effect ap-
peared it can be due to using elements of educational approaches that
have shown effectiveness and not due to special sensory equipment,
environment or sensory stimulation. Overall, it can be concluded that
sensory integration therapy has limited scientific evidence and sup-
port and further research is needed to determine the appropriateness
of this intervention for children with ASD.
3. Tomatis therapy
Tomatis is a method created by Alfred Tomatis, a French doctor,

sixty years ago. This method is based on the idea of connectiveness
between the brain and auditory information from the environment via
auditory organ. Ear also has a vital role in capturing our movements,
balance, coordination and rhythm. For this reason, relation between
the environment and the brain the ear creates, has a great impact on
numerous aspects of human in everyday life. Therefore, Tomatis is
created with an idea of stimulating the brain through the auditory
system in order to improve the quality of listening for children and
adults. It operates through a device called TalksUp. The device modi-
fies voice and music according to specific guidelines. It contains many
features which allow swift transitions between high and low frequen-
cies which cause the ear to have many adjustments and thus stimu-
late the brain. Before the beginning of the Tomatis sessions, Tomatis
professional assesses clients listening abilities and creates and indi-
vidual program accordingly. It’s claimed to be a complementary tool
which has an effect on attention, learning, voice and language, motor
skills and coordination and personal development. It can help people
whose disorders affect those areas of functioning like autism spectrum
disorder (ASD), sensory processing disorder or Down syndrome (To-
matis Method, 2019).
Abedi Koupaei et al. (2013) reported about the effects of the Tom-
atis sound therapy method on the ASD symptoms of 34 autistic chil-
dren between 4 and 8 years old in Teheran. The study reported possi-
ble positive impact on reduction of the autistic symptoms, increase of
social interaction and reduction of autistic movements. Conclusions
of this study should be taken with caution because during test runs,
parents at times did not respond appropriately to the presented ques-
tions. It is also not known if the children attended some other thera-
pies simultaneously. To conclude about success of this method on re-
duction of autistic symptoms, more strict and comprehensive research
should be conducted.
Effects of Tomatis sound therapy on the language in children with
autism were investigated by Corbett, Shickmann & Ferrer (2008). Re-
sults of their study show no significant differences on the language
measures across the groups attributed to the treatment condition. All
subjects in the study showed improvement in their language skills over
time, but the change did not appear related to the treatment condi-
tion. Limitation of this study is a small and heterogenous sample size.
Neysmith-Roy (2001) applied Tomatis Method on 6 autistic boys
(aged from 4 to 11 years) and evaluated treatment with Children’s Au-
tism Rating Scale (CARS). This research suggests a possibility of ben-
efit of Tomatis Method on some prelinguistic behaviours of autistic
boys especially when combined with other behavioural programmes.

Study also has its limitations. During the research, experimental con-
ditions were not rigorous enough. Effectiveness of a treatment was
dependent on parents’ perception, some of the children were previ-
ously included in some form of treatment and one boy was included in
several simultaneous treatments during the research. Study suggests
evaluation of effects of Tomatis Method in more rigorous research
environment with controlled experimental conditions.
Thompson and Andrews (2000) reviewed theoretical foundations
of the Tomatis Method and research conducted on children with
learning and communication disorders. Their review reports some
positive effects on different areas of functioning of children with dis-
abilities, but also suggest additional research is necessary.
Research of the effects of the Tomatis Method on persons with ASD
exists, but it is not designed in a way that could facilitate the conclu-
sions of its effectiveness. More rigorous research with controlled ex-
perimental conditions is recommended. Therefore, to ensure the best
possible way of supporting the development of persons with ASD,
methods with more substantial scientific background should be used.
4. Neurofeedback
Neurofeedback is a method that uses computer technology to

teach individuals to control their brainwave patterns by using operant
conditioning. Electrodes that measure brainwave activity are placed
on individuals head while the individual is engaged in a computer
game. When he starts to control his brainwave activity, his score gets
higher and he is able to progress in the game (Coben, Linden & Mey-
ers, 2010). Neurofeedback is scientifically proven to be successful in
treatment of ADHD (inattention, impulsivity and hyperactivity be-
haviours) (Arns et al., 2009), and therefore it is assumed that it could
be successful in treatment of other disorders including autism spec-
trum disorder (ASD) (Coben, Linden & Meyers, 2010).
Holtmann et al. (2011) rewieved studies that evaluated effective-
ness of neurofeedback when it is used as a method of treatment of
ASD core symptoms. The study showed research that includes neu-
rofeedback and ASD and may show success in treatment, but actual
improvement is in comorbid symptoms of ADHD. There is no evi-
dence on improvement of ASD symptoms as a consequence of neu-
rofeedback treatment. This study also has its limitations connected
to the reviewed studies including short duration, small sample size,

insufficient control interventions, variable diagnostic criteria and lack
of generalizability.
Rossignol (2009) did a systematic review of novel and emerging
treatments for ASD. By using verified evidence-based guidelines, each
treatment was assigned with a grade of recommendation. Neurofeed-
back was assigned with “Grade C” which means that method is “sup-
ported by at least 1 nonrandomized controlled trial and 2 case series”.
Therefore, it is currently not scientifically approved as a method for
treatment of ASD and additional research is necessary.
Effects of the neurofeedback treatment on children with ASD was
investigated by Kouijzer et al. (2010). The study reported positive ef-
fect of treatment with the reduction of theta power confirmed by pre
and post QEEG measures for 60% of the participants. Parents and
teachers also reported positive effects on the communication skills
and reciprocal social interactions. Study has its limitations. There
is a possibility of bias of parents and teachers that filed behavioural
questionnaires before and after the treatment. Treatment effective-
ness could also be questioned by examining the difference in attention
given to experimental and control group. Experimental group may
have had better results because of the increased amount of attention
and time they were given.
Friedrich et al. (2015) examined neurofeedback training ap-
proaches to prove effectiveness on cognition, behaviour and emotion
regulation of 13 children with ASD. Treatment was based on a game
that provided feedback based on emotional responsiveness and imita-
tion and encouraged social interactions. Study reports improvements
in electrophysiology of brain expressed as increased mu suppression,
emotional responsiveness and better behaviour in everyday life. Con-
clusions of this study need to be considered with caution because of
its significant limitations. Study had a small sample size and partici-
pants were included in other treatments during the study. As it was
reported, 9 out of 13 children were included in occupational therapy,
applied behaviour analysis, music therapy, speech therapy, cognitive
behavioural therapy, Son-Rise therapy, real opportunities for inde-
pendence therapy, adaptive physical education or social skill practice
at school. Results of the study could also be influenced by interaction
between the children and the staff during therapy sessions.
More recent study conducted by Carrick et al. (2018) investigated
effect of neurofeedback method using novel Mente Autism device tool
on modulation of brain activity that could result in modification of the
behaviour of children with ASD. Study had 34 subjects (17 Active

and 17 Control) and results showed improvements of the experimen-
tal group in areas of brain activity, behaviour and sensorimotor be-
haviour. Despite of positive results, study suggested further research
should be conducted due to several constraints. Large drop out rate
in post treatment condition was reported, there were challenges in
standardization of testing procedures due to behavioural characteris-
tics of children with ASD. Generalization to a larger population could
also be questionable because of the study being conducted in special-
ized neurological clinic. During the study, participants were included
in other therapies that could have influenced the results of this study.
In conclusion, although neurofeedback method is proven to be
effective on ADHD symptoms, there is still no substantial scientific
evidence that it has the same effect on the ASD symptoms. Further
research with better experimental control and more rigorous methods
should be conducted.
These short reviews have shown that 3 most popular treatments
don’t have sufficient evidence of effectiveness for children with ASD
and yet they are widely used and also recommended by professionals.
Professionals are the ones that have to help parents in selecting the
best treatments for their child and also empower them to make in-
formed choices themselves.
5. Suggestions for professional while supporting parents

in choosing best treatment for their child with ASD
Considering the complex nature of ASD and parents’ perspective
and context it is easy to understand strong need of parents for search-
ing numerous treatments and the most effective and fast solution for
their children. Due to their fear and hope for recovery parents are
trying all sorts of proven and unproven treatments. They also hope
that their child is misdiagnosed or savant with unrealised potential
(Paynter et al., 2019). The role of parent is to hope for miracle for
their children. But what is the role of professionals in leading and sup-
porting parents in the process of finding the best possible treatment
for their children?
It is important that professionals lead parents in the way to choose
empirically validated treatment.
After finishing assessment professionals must explain parents why
the child is meeting the criteria for the diagnosis and why particular
treatment is recommended. It is important to give parents reliable

resources in which they can check efficacy of treatment. They need
to direct parents in choosing treatments with arguments in favour of
the best solutions (Kay, 2016). It is very important to be specific in
giving information. Professionals should work together with parents
in targeting problems and behaviours of child with ASD that need
to be improved and treated. Common agreement will help parents
to trust more in professional and to give them a sense of control in
this stressful situation. Professionals agree with parents about the data
collection procedures and evaluating the effects of treatments. It is
important to show, discuss and interpret the effectiveness of the treat-
ment for the child.
Authors Celiberti, Buchanan, Bleecker, Kreiss & Rosenfeld (2004)
in accordance with McDonald, Pace, Blue & Schwartz (2012: 300)
suggest some key questions for parents and professionals that can
help them in considering the right treatment:
1. First and foremost, what research is available in the professional
literature that confirms the effectiveness of this approach? Is there
a research that does not support the effectiveness of this approach?
2. Does the published literature represent objective, empirical re-
search (i.e., scientifically driven and data based)? Or is it descrip-
tive research that describes someone’s impressions over time?
3. What areas of functioning and specific behaviors are being targeted
by this approach? In other words, how exactly will this treatment
affect your student/child with autism?
4. Are there adverse effects associated with this treatment approach?
5. Are there schools and agencies utilizing this particular approach
that are committed to science-based treatment?
6. Does every individual with autism receive the exact same treat-
ment? If not, how will this treatment be individually tailored and
based on what factors? In other words, how can this treatment ap-
proach be adjusted to meet the needs of your student/child?
7. What baseline data are requested by the service provider? Does the
service provider discuss ongoing data collection?
8. How will the success be measured?
If parents have trust in professionals, they will share alternative
options they have heard about and question professional about it.
Professional should respect parents right for his or her own opinion
and for their right to make decisions for their children regarding treat-
ment. However, professionals must explain that scientific evidence
and the use of objective data should guide treatment options. If par-
ents decide to try alternative treatment professional can proceed with
his or her work with child and possibly help to collect data and eval-
uate alternative treatment. If parents insist on using treatments that
are harmful for children professional can refuse to work with child
(Kay, 2016).
It is very important for professionals to improve their knowledge
about evidence-based treatments and keep themselves up to date with
fresh data. Furthermore, it is also important to improve their ability to
communicate with parents and develop creative approaches in edu-
cating parents as well as encouraging self-directed learning. It is better
not to stick just on trying to exterminate misunderstanding but to give
parents something else to believe in.
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Language and communication
difficulties in Autism Spectrum
Disorder
Ioana Darjan 1, Mihai Predescu1
Introduction
Autism spectrum disorders refer to a cluster of disorders character-

ized by various degrees of social isolation, communication difficulties,
and preference for sameness/peculiar and repetitive behaviors. Al-
though all these characteristics are intimate interlinked and share sim-
ilar brain and cognitive functioning specificity, this chapter insists on
communication and language disorders. It will investigate the commu-
nication and language peculiarities of people with ASD and their im-
plications for effective interventions. The efforts to develop and imple-
ment efficient strategies and techniques to work with people with ASD
should begin with careful assessment of their particular developmental
profiles and their gennuine needs (Luștrea, Al Ghazi & Borca, 2017).
1. Communication, language and speech1
As a general term, communication refers to transmiting and re-

cepting information. In this process, the following elements are nec-
essary: a sender, a receiver, a message, an intention, and a shared
communication channel or medium. Communication has three main
functions: instrumental (achieving desirable ends), social (connect-
ing with others), and expressive (expressing own’s thoughts and
emotion) (Bogdashina, 2005).
Communication can be non-lingvistic (body language, gestures,
facial expressions) or lingvistic (spoken/written language, sign lan-
1
West University of Timisoara, University Clinic for Therapies and Psycho-pedagog-
ical Counselling. The authors of this chapter had equal contributions in concept develop-
ment, design, analysis, writing, or revision of this manuscript.
guage). An intremediate ways of communication are the paralingvistic

ones: volume, pitch, intonation of speech or graphological aspects of
written language.
Persons with ASD might have difficulties in all these type of com-
munication. Along with impaired lingvistic and non-lingvistic difficul-
ties, children with ASD have difficulties in imitation and imaginative
play, categories of behaviors labelled sometimes as social deficits and
other times as communication deficits, according to APA (2000) and
WHO (1992). For efficient assessment and intervention, some studies
suggest that all these behaviours should be considered social commu-
nication aspects (Moldin & Rubenstein, 2006).
Language can be defined as a conventional, structured system of
communication, based on agreed use of nuclear units (phonemes,
graphemes or signs) and of a set of combination rules, by a group of
people. Using a system of symbols and rules of combinations, language
is one of the best ways of communication, due to its flexibility, expres-
sivity and efficiency (Bogdashina, 2005). Language, as form of commu-
nication, is both receptive (receiving, decoding, and understanding the
message) and expressive (using words, spoken or written, to express
your own mental state, thoughts, emotions, etc.). The process of ac-
quiring and using human language depends on the development and
functioning of diferent antomical structured, which evolved and speci-
alyzed, along our philogenesis, in consuming and producing language
(cortical and subcortical structures, sensorial receptors, vocal cords,
and motor articulatory elements) (Lieberman, 2002).
Human language, as well as other complex human behaviors as
walking, thinking and reasonning, are regulated through neural cir-
cuits from subcortical structures and neurocortex. Liberman (2002)
affirms that the traditionalist locationist brain model (the Broca-Wer-
nicke/Gerschwind model), from the beginning of 19th century should
be replaced by the circuit models.
Current studies and knowledge in neurophysiology support the the-
sis of computational structure of biological brains, and neurophysiolog-
ical activity is better explained as a two levels operation. Thus, although
is a comun evidence that complex behaviors are regulated in particular
parts of the brain, but not in themself. They could not regulate alone
these behavious, but these specialyzed “populations” of neurons, which
carry out local process or processes, are linked or “project” to neuronal
populations from other neuroanatomical structures (Poeppel et al.,
2012; Lieberman, 2002). Through these successive links form a neural
“circuit” – the brain basis of a complex behavior (Lieberman, 2002).
Language and communication difficulties in Autism Spectrum Disorder 89
This “circuit” model are sustained by clinical observations (stud-

ies on aphasia, Parkinson’s disease, hypoxia, and so on), where the
type and severity of the impairement and the rehabilitation depend by
the different localisation of damage (cortical and/or subcortical). Per-
sons with ASD seem to present reduced activation and connectivity
in frontotemporal network specialyzed for language, less functional
lateralization for language or the tendency for right emisphere domi-
nance (Mody et al., 2013).
Cortical and subcortical structures have the role of decoding a mes-
sage received via auditory (for spoken words) or visual (for written
words) receptors (receptive language), and also the role of comanding
and regulating the activity of vocal cords and articulatory system (for
speech) or of the hand (graphia) in generating the response (expres-
sive language).
Receptive language develops prior to expressive language, that is
we understand the speech of another person before we are able to
speak.
Speech, the ability to speak, refers to spoken, expressive language.
Recent studies suggest that even the paradigm of stable functional
language network become obsolete and limitative, and should be
explored the hypothesis of a dynamic and contextualyzed networks
reconfiguraton during language comprehension (Hasson, Egidi,
Marelli & Willems, R.M., 2018). Agreeing with the assumption that
ontogenetically and phylogenetically, the urge to communicate pre-
cedes linguistic abilities (Liszkowski, 2011; Tomasello, 2003), lan-
guage being a highly efficient code for this purpose, Hasson et al.
(2018) consider the importance of context in comprehension and ad-
vocate for a new neurobiological non-language-centered conceptual
framework, which better explain the connections between language
and other cognitive systems. They highlight the impact of multiple
contextual characteristics in integrating and comprehending the in-
coming language contents.
2. Characteristics of language and communication in ASD
It is well-known and documented that the core features of ASD are

social and communication difficulties (Al Ghazi, 2018; Gernsbacher
et al., 2017; Moldin & Rubenstein, 2006).
What differentiate mostly the communication deficits of children
with ASD is the lack of social communication, such as gesture, in-
creased eye contact or atention to others’ facial expression, to com-

pensate for language delays. The most representative characteristics
of social communication deficits in person with ASD are the lack of
reciprocity and joint attention (Moldin & Rubenstein, 2006; Lord &
Corsello, 2005; Baranek, 1999; Mundy & Sigman, 1989).
At pre-linguistic period, babies use non-verbal communicative be-
haviors (such as crying), which are easy to understand and to interpret
by their carers. Children with ASD seem to have difficulties in devel-
oping these conventional non-verbal communicative behaviors.
While aproximately 25% of persons with ASD never develop lan-
guage, majority of children with ASD present delays both in receptive
and expressive language (Charman et al., 2005), as well as children
with other developmentally disorders. The presence of speech before
the age of 5 is considered a good predictor for better evolution of lan-
guage development in persons with ASD (Mody & Belliveau, 2013).
Also, persons with ASD present problems in all aspects of language:
prosody, phonology, semantics, syntax, and grammar.
For many years, even from the first enter in the American Psychi-
atric Association’s Diagnostic and Statistical Manual of Mental Disor-
ders in 1980 (DSM-III, APA 1980), an important criteria for autism
diagnostic was “gross deficit in language development” or “peculiar
speech patterns”, such us echolalia, metaphorical language, and pro-
nominal reversal.
In the following editions of DSM (DSM-III-R, APA 1987, DSM-IV,
APA 2000; DSM-IV-TR, APA 2004), this criterion was modified
(Gernsbacher et al., 2017), echolalia and pronoun reversal becoming
optional, and metaphorical language being consider idiosyncratic lan-
guage. The latest edition of DSM (DSM-5, APA 2013) do not men-
tion pronoun reversal and delay in language development as criteria,
and echolalia and idiosyncratic language are considered possible “re-
stricted, repetitive patterns of behaviors, interests, or activities”.
Gernsbacher et al. (2017) presents evidences that these peculiar
communication phenomena are not unique to autism, they manifest
also in typical developed children, children with language delay, chil-
dren with intelectual disability, therefore they shouldn’t serve as diag-
nostic criteria for autism.
Latetly, in the 90’, researchers became interesting in an another
particular phenomenon in speech and language development, which
seems to be unique and specific for children with ASD: the surprising
abnormal comprehension versus production lag (Cohen & Volkmar,
1997, cited by Gernsbacher et al., 2017). While, in typical language
development, comprehension (receptive language) is always superior

to production of language (expressive language) (Fenson et al., 2007;
Schmitt, 2008; Pilulski & Templeton 2004; Benedict 1979, cited by
Gernsbacher et al., 2017), some studies suggested that this logic and
quasi-universal rule doesn’t apply to ASD. Instead, some research-
ers claim that this lag between language comprehension and language
production is reduced in the case of children with ASD, or doesn’t
exist (Goodwin et al., 2012; Ellis Weismer et al., 2010), or is even
reversed (Maljaars et al., 2012; Hudry et al., 2010).
Even though is plausible a reduction of lag between comprehen-
sion and production of language in children with ASD, the total lack
of this phenomenon or the reversed situation imply a hard-to-believe
model of language and speech acquisition (Gernsbacher et al., 2017).
A meta-analisys of over 60 studies (Kwok et al., 2015) confirmed that
the language development of children with ASD presents a normative
relation between language comprehension and language production.
So, an abnormal comprehension-production relation in language ac-
quisition is, also, not a valid diagnostic criterion.
Gernsbacher et al. (2015) consider that language development in
ASD may be delayed, but is not deviant.
3. Implications for interventions
Magyar (2011) classifies specific therapies for ASD in four major

types, based on the their underlying theoretical models:
– behavioral (such as Applied Behavior Analysis-ABA, Verbal Be-
havioral Therapy-VBT, Cognitive Behavioral Therapy-CBT or Dis-
crete Trial Training-DTT);
– developmental DIR method (Floortime) - Developmental Individ-
ual Difference Relationship;
– milieu teaching (Relationship Development Intervention);
– therapeutic (Occupational therapy, Sensory Integration Therapy,
Speech-Language Therapy, Physical Therapy).
Examples of combined approaches are SCERT model and Spell
approach.
Using two dimensional (type of environments and type of interven-
tion) model of interventions, Predescu et al. (2018) advocate for an
ecological holistic approach, who should aim to coordinate multiple
actions at different levels of child’s life.
It is obvious that efficient therapies for children with autism should

focus on developing social communication, both non-linguistic and
linguistic.
Conducting a meta-analysis on researches on autism which used
and tested instruments promoting augmentative and alternative com-
munication, Lima Antão et al. (2018) conclude that these instruments
improve communication process children with ASD.
MacDonald (2004) highlitghts the idea that social learning requires
much more than language, and efficient communication requires
stable relationships and appropriate responses to immediate natural
learning. He insists in acknowledging, respecting and profiting of
child’s actual developmental stage undergone through becoming a
real and efficient social and communication partner: interactive play,
nonverbal communication, social language, conversation, and civil
behavior. Understanding a child’s own special way of relating to the
world represents the key for social and communication learning.
Conclusions and recommendations
Even though we do not know (yet) the language of another person,

it doesn’t mean that we cannot communicate. Even though the other
person doesn’t speak or communicate like us, it doesn’t mean she do
not speak and do not communicate at all.
Communicating with another person do not imply with necessity
that the only solution is to teach her our language or ways of com-
munication. When we meet a new foreign person of witch language
we do not know, we can still communicate with her, either using non
-linguistic communication or collaborating for learning each other’s
languages.
In traditional therapies for person with special needs, the emphasis
and the effort are on “fixing” incorrect “language” and teaching “cor-
rect” or “mainstream” language or ways of communication.
We consider that it is better to begin and to conduct this process of
acquiring mutual understanding and reciprocal communication, with
mutual respect and collaboration, till we reach the common ground.
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The maladaptive behaviors in the
Autism Spectrum Disorders.
Guidelines for the evidence-based
educational intervention
Saverio Fontani 1
1. The Autism Spectrum Disorders
Autism Spectrum Disorders (ASD) currently represents a share of

complex developmental disabilities. The increase in their incidence
in the school population justifies the need for adequate responses,
on the part of the training systems, to the specific educational needs
from them presented (APA, 2013; CDCP, 2014). The advent of the
Evidence Based Education (EBE) perspective, according to which the
dissemination of educational practices must be guaranteed, whose ef-
fectiveness has been validated according to experimental procedures,
has significantly influenced the research and implementation of edu-
cational models ‘social inclusion of students with Autism Spectrum
Disorders (Schreibman, 2005; Guldberg et al., 2011; Fein et al., 2013;
Cottini & Morganti, 2015).
In recent times, there has been a progressive abandonment of ed-
ucational approaches whose effectiveness is considered doubtful or
minimal, in favor of models based on experimental evidence, and in
particular, those validated on experimental designs that provide for
comparison between the performance of a group experimental and
control group (Hammersley, 2007; Matson, 2014). Respect for this
condition, according to the perspective of Evidence Based Educa-
tion, is one of the fundamental paradigms for verifying the effective
effectiveness of an educational intervention, in analogy with the meth-
odologies for verifying the chemotherapeutic or psychotherapeutic
interventions that have long been used in biomedical and psychoedu-
cational approaches. (Chambless & Hollon, 1998; Odom et al., 2005;
Hammersley, 2007; Chaby et al., 2012).
Despite the debate behind the opportunity to consider the effec-
1
University of Florence.
tiveness of educational practices on the same level as the effectiveness

of pharmacological intervention, it is likely that the selection of edu-
cational approaches based on their effectiveness in the promotion of
adaptive behavior will progressively influence the educational inter-
ventions aimed to social inclusion of students with ASD. The Autism
Spectrum Disorders may represent an effective example of complex
developmental disability involving the mobilization of educational,
health and family resources (Parsons et al., 2011; Fein et al., 2013),
f the modification of maladaptive behaviors that hinder the develop-
ment of prosocial skills and personal autonomy (Odom et al., 2010;
Flynn & Healy, 2012; Fein et al., 2013).
For this reason, in this chapter a brief review, of the educational
intervention models for the reduction of maladaptive behaviors is pre-
sented, and his implications for the Special Education of child with
ASD are discussed.
2. The maladaptive behaviors

in the Autism Spectrum Disorders
Autism Spectrum Disorders have recently been redefined in the

Diagnostic and Statistical Manual of Mental Disorders-DSM 5 (APA,
2013). The criteria of the DSM 5 are based on two indicators, repre-
sented by the deficits of social communication and by the restriction
and repetition of behavior.
The criteria for the communication deficit are presented in Tab. 1.
Tab. 1. Diagnostical criteria for the ASD (APA, 2013)
Communication deficit
a. Abnormal social approach. Reduced interest in the sharing of interests
and emotions.
b. Deficit in non-verbal behaviors used for social interaction. Abnormality in
eye contact and body language. Deficit in understanding and use of non
-verbal communication. Absence of facial expressiveness and gestures.
c. Deficit in the development and maintenance of appropriate relationships.
Difficulty in regulating behavior with respect to different social contexts.
Difficulty in sharing imaginative games and making friends. Apparent lack
of interest in people.
The maladaptive behaviors in the Autism Spectrum Disorders 99
Restriction and repetition of behavior

a. Language, motor movements or use of stereotyped or repetitive objects.
Presence of motor stereotypies, echolalia or repetitive use of objects.
b. Adherence to the routine with excessive resistance to changes.
c. Fixation in restricted interests with abnormal intensity. Excessive attach-
ment or concern for unusual objects.
d. Abnormal interests with pervasive manipulation of objects and attraction
towards lights or rotating objects.
e. Alterations of reactivity to sensory stimuli, with apparent indifference to
heat, cold and pain.
The severity of the disorder is represented by a three-level scale

(Relevant, Mild and Moderate), which represents the function of the
amount of support required by the environment (APA, 2013).
The analysis of the criteria makes it possible to understand the sig-
nificant role of stereotyped behaviors in the alterations of the Autism
Spectrum, given that they are connect to many indicators. The re-
petitive behaviors and maladaptive behaviors represents a significant
proportion of the behavioral profile commonly associated with the
disorder, and it is evident that their pervasive presence can to hin-
der the adaptation of the student with ASD to social, educational or
domestic contexts (Murphy et al., 2009; Mulligan et al., 2014). The
presence of stereotyped behaviors seems to represent a peculiar char-
acteristic of Autism Spectrum Disorders. The maladaptive behaviors
are present in other cognitive disabilities, but the typical behavior
profile associated with ASD is influenced in a massive way. This data
is evidenced by studies based on the comparison with other types of
intellectual disability (Bodfish et al. al., 2000; Rapp & Vollmer, 2005;
Langen et al., 2011a; Boyd, McDonough & Bodfish, 2012). Despite
the difficulties related to estimate of their incidence can considerate
the data reported by Murphy et al. (2009) can to be considered. In the
study, conducted on a sample of 157 children with ASD, is possible
to consider how the 72% of children with ASD present stereotyped
behavioral repertoires.
The repetitive behaviors involve various areas of behavior of the
student, resulting in the form of vocal stereotypies and perseverative
language, with the presence of repetitive questions and, sometimes,
incessant discussions in the finality. Behavioral patterns of manipula-
tion are common with objects of specific interest, and are commonly
associated with the hand shaking, with the body rotation and with the
facial rubbing (Murphy et al., 2009; Sigafoos et al., 2009; DiGennaro

Reed, Hirst & Hyman, 2012; Mulligan et al., 2014). In ASD with low
cognitive functioning, similar behaviors can represent the child’s main
activity, with evident negative effects on his communicative compe-
tences and on the understanding of environmental issues (Rapp &
Vollmer, 2005; Sigafoos et al., 2009; Boyd, McDonough & Bodfish,
2012, DiGennaro Reed, Hirst & Hyman, 2012). There are present
significant elements of self-injurious behavior, which can to represent
a risk factor for the personal safety of the student (DiGennaro Reed,
Hirst & Hyman, 2012; Mulligan et al., 2014).
The debate on the causes and functions of stereotyped behaviors
in the disorder involved numerous authors who indicated various en-
vironmental, neurological and pharmacological explanatory factors
(DiGennaro Reed, Hirst & Hyman, 2012; Mulligan et al., 2014). In
this perspective, a significant role is played by the social deprivation
and by poor environmental stimulation contexts (Rapp & Volmer,
2005; Langen et al. 2011a; 2011b; Mulligan, 2014).
The development of repetitive and limited behaviors is observable
in fact in animals confined in poor environmental contexts with low
levels of environmental stimulation (Langen et al 2011a). Similarly,
the children born in the socially deprived environments (Langen et
al., 2011b), are significantly involved in stereotyped motor behaviors,
as originally observed by Spitz (1945) in his pioneering study on hos-
pitalized children.
The role played by physiological stress is considered a factor ca-
pable of favoring the interpretation of stereotyped behaviors. High
levels of stress con to increase the frequency of repetitive behaviors,
both in the animals and in the human beings (Rapp & Vollmer, 2005;
Langen et al., 2011b). The involvement in stereotyped behavior could
so be considered as a consequence of the high levels of stress to which
the child with ASD is subjected, especially in cases of changes in his
daily routine (Rapp & Vollmer, 2005).
Alternative interpretations are present, according to which the
involvement in the stereotypies could provide the child reinforce-
ments, derived from the increase in the cardiac frequency. The mo-
tor stereotypies, in other words, could be used by the child with
ASD for the search for states of well-being and activation following
the increase in his heart rate (Lydon, Healy & Dwyer, 2012; Mulli-
gan et al., 2014). An ulterior line of interpretation is connecting to
the role of neurochemical mediators involved in the production of
stereotypies. The intake of dopaminergic drugs is able to increase
stereotyped behaviors in animals, while the injection of dopamine

agonist decreases the frequency of behaviors of such order (Langen
et al., 2011a; Langen et al., 2011b).
Finally, the role of the explanatory factor represented by the Ap-
plied Behavior Analysis – ABA (Lovaas, 1987) must to be considered
for the understanding of stereotyped behaviors in Autism Spectrum
Disorders. A similar perspective, derived from the Operating Con-
ditioning Theory, may result in a better understanding of the func-
tion of repetitive behavior through consideration of the reinforcement
provided to child. The ABA approach should not be considered as a
model of specific intervention, but rather a research program aimed
at identifying the factors that motivate behavior (Lovaas, 1987;1993).
The identification of motivating factors is preliminary to the adoption
of interventions aimed at modifying behavior, even if frequently this
preliminary analysis is omitted (DiGennaro Reed, Hirst & Hyman,
2012; Matson et al., 2012; Mulligan et al., 2014).
The information obtained from the behavioral analysis allows to
identify the maladaptive behavior, and to replace it with adaptive
behaviors, based on the development of the communicative com-
petences of the child with ASD. The ABA approach is particularly
significant for educational interventions aimed at students with ASD
with low cognitive functioning associated with maladaptive behaviors
(Matson et al., 2012; Mulligan et al., 2014; Cottini & Morganti, 2015).
The ABA approach results based on the research of the factors
that influence the maintenance of non-adaptive behavior. The analysis
processes of the antecedents and the consequences of behavior are
decisive, and confirmed the needs of contextual analysis of the envi-
ronment in which the target behavior of the ‘intervention. Similarly,
the identification of the context, the structure of the episode and the
people involved in the event is decisive for the identification of the
functions of each maladaptive behavior (Lovaas, 1987, 1993; Cottini,
2011; Matson et al., 2012). The approach, so, is oriented towards the
teaching of specific skills for the improvement of communication and
for the replacement of maladaptive behavior with other more adap-
tive, through the teaching of socially shared modality of requests. The
verbal or motor maladaptive behavior acts, is maintained in the stu-
dent’s repertoire cause of the automatic reinforcement produced by
it. Must to be considered, moreover, the consequences on the social
environment, such as those represented by the research of attention of
the interlocutors of the child (Lovaas, 1987; 1993; Boyd et al., 2012;
Wilke et al., 2012).
3. Evidence Based Models for Educational Intervention

in Stereotypies
The perspective of Evidence Based Education is characterized by

the need for empirical validation on the basis of comparisons between
the pre- and post-training scores of experimental groups and ran-
domly assigned control groups (Chambless & Hollon, 1998; Odom
et al., 2005; Hammersley, 2007). One of the first attempts to develop
a hierarchical model of the effectiveness of educational models for
Autism Spectrum Disorders according to the EBE approach is attrib-
utable to Schreibman (2005).
According to this study, the numerous models of educational in-
tervention developed in the last decades can to be grouped into four
great macro categories, summarized in the Tab. 2.
Tab. 2. Macro-Categories of interventions for the ASD

(adapted from: Schreibman, 2005)
I. Behaviorist perspective (ABA, DTT, PRT)

II. Various theoretical models (AAC, PECS)
III. Psychodynamic interventions
IV. Pharmacological and nutritional factors
In the first macro-category all intervention programs derived from

the behaviorist perspective are considered. In this grouping are present
the models that have shown the presence of higher levels of effec-
tiveness based on experimental evidence (Odom et al., 2005; Lequia,
Machalicek & Rispoli, 2012; Fein et al., 2013; Mulligan et al., 2014).
This macro-category includes both the models based on the ABA
approach (Lovaas, 1993), and those derived from this perspective.
The Discrete Trial Training- DTT (Lovaas, 1987), the Denver Model
(Rogers, 1996) and the Pivotal Response Training - PRT (Koegel,
2000), are characterized by high levels of effectiveness for the change
of maladaptive behaviors.
The second macro category of models includes the programs de-
rived from different theoretical models. The programs derived from
the Alternative and Augmentative Communication - AAC (Beukelman
& Mirenda, 2013) and from the Picture Exchange Communication Sys-
tem - PECS (Bondy & Frost, 1994) are the most significant. These
programs present objectives relating to overcoming of the commu-
nication deficit through the improving of the understanding of so-

cial stimulation. The reduction of the maladaptive behavior is strictly
related with the acquisition of communication skills. Although these
interventions have not yet been validated according to the EBE per-
spective, their significant role in the reduction of stereotyped behav-
iors is presumably.
The development of communication skills, in analogy with the
ABA perspective, would make marginal the reference to the maladap-
tive behavior, given that the result related to the attention request. The
request can to be achieved through verbal request or through the indi-
cation of a symbol, rather than with the maladaptive behaviors (Weth-
erby & Prizant, 2000; Mirenda & Iacono 2009). The recursive refer-
ence to the systems of Alternative and Augmentative Communication
in the systems of international guidelines for the treatment of the dis-
order (SIGN, 2007; ISS, 2011; BPS, 2012) demonstrates their presum-
able efficacy in the reduction of repetitive and stereotyped behaviors.
The third macrocategory includes the psychodynamic interven-
tions, which have enjoyed wide popularity until the Nineties, but
which currently seem to play only a documentary role for the recon-
struction of the stages that have characterized the evolution of inter-
ventions (Schreibman, 2005; Fein et al., 2013). The interventions of
this order are mainly documented by individual case studies, which
do not meet the empirical validation requirements required by the
EBE perspective.
The fourth macrocategory are finally related to pharmacological and
nutritional factors, according to which the disorder would be caused
by pharmacological or nutritional factors (Schreibman, 2005). The ef-
fectiveness of nutritional interventions is presumably doubtful, while
pharmacological interventions transcend the limits of the present
study, which is based on the analysis of educational models. How-
ever, from the perspective of Schreibman (2005), the pharmacological
interventions are also documented by individual case studies, and his
efficacy lack of experimental evidence (DiGennaro Reed, Hirst & Hy-
man, 2012; Mulligan et al., 2014).
4. Models based on the antecedent
According the recent reviews, a determining role for the reduction

of behavioral stereotypies in Autism Spectrum Disorders is that cov-
ered by Applied Behavior Analysis interventions, and in particular
by those integrated by the preliminary analysis of repetitive behavior

functions. The review by DiGennaro Reed, Hirst & Hyman (2012), in
particular, is based on the analysis of the studies on the effectiveness
of the interventions conducted from 1980 to 2012, while the review
by Mulligan et al. (2014) analyzes the results of 71 studies conducted
from 1990 to 2014.
The criteria used by Mulligan et al. for the definition of effective
treatment they are based on the selection of studies that used stan-
dardized assessment scales for the detection of the intensity and fre-
quency of motor stereotypies, and that used samples with at least one
subject with ASD. The evaluation of the effectiveness of the interven-
tions was calculated based on the percentage of repetitive behavior
reduction. For to be considered effective, an intervention must have
led to a reduction of at least 50% of the frequency / intensity of the
stereotypies (Mulligan et al., 2014).
Based on these analyzes, the intervention models characterized by
the highest levels of effectiveness for the treatment of behavioral ste-
reotypies were identified. A large proportion of the models is attrib-
utable to the ABA approach, as originally conceived by Schreibman
(2005) and confirmed by the recent meta-analyzes (Rapp & Vollmer,
2005; Boyd, McDonough & Bodfish, 2012; DiGennaro Reed, Hirst &
Hyman, 2012); Mulligan et al., 2014).
The most effective models for the reduction of the stereotypical
maladaptive behaviors are those based on antecedent treatments, the
analysis of consequences (Consequence - Based Treatments) and those
based on the teaching of skills (Skills - Based Treatments). The inter-
vention models related to the analysis of the antecedents represent
one of the main areas of intervention of the ABA approach. They are
characterized by the preliminary analysis of the functions of the ste-
reotypy and by the modifications of the educational context (Matson
et al., 2012; Wilke et al., 2012).
The manipulation of the environmental context according to guide-
lines provided by the analysis of the factors prior to the development
of non-adaptive behavior is in fact one of the main factors able to
affect the issue of stereotypy. An example of intervention based on the
antecedents is represented by the modification of the context based
on the enrichment of stimulations, through the free access to student’s
favorite reinforcement, like toys or objects of specific interest. The
continuous access to the preferred stimuli allows identifying the ele-
ments that possess the same reinforcing capacities of the stereotypies.
The interventions based on interrupt and response redirection tech-
niques (RIRD, Response Interruption and Redirection) can be inserted

in this interventions, cause them allows the interruption of the vocal
or motor stereotypy and its replacement by exercises on the social
rules based on the request of objects (Ahearn et al., 2007).
In the literature, the meta-analyzes identified six studies, mostly
based on the analysis of single cases, which demonstrated significant
reductions in stereotypies through interventions based on anteced-
ents (Boyd, McDonough & Bodfish, 2012; Mulligan et al., 2014).
The study of greater relevance is that of Ahearn et al. (2005), in
which the techniques of continuous access to objects of interest were
applied with two students with ASD of 11 and 13 years of age. The
results showed that the identification of an object that presents the
same reinforcing properties of the stereotypy could to favor the re-
duction of maladaptive behaviors (percentage of reduction of the
stereotype: 78.04%). The relative ease of exporting the technique
in educational contexts of the Primary or Secondary School of our
country should be noted. The regulation of the access to the objects
of specific interest of the student could represent a basic component
of the educational strategies for the students who present evident
motor or verbal stereotypies.
The study conducted by Sidener et al. (2005) is representative for
the interventions based on the analysis of the antecedents. In this
analysis, the authors identified a stimulus capable of competing with
the functions of stereotypies in two 6-year-old girls with severe ASD.
The stereotypies were represented by continuous scratching of the
surfaces of the doors and walls. In this case the technique used was
that of environmental enrichment: in the room were placed toys iden-
tified able to compete with the stereotypies. The continuous access
to toys resulted in a significant reduction in stereotypies observed in
both participants (percentage reduction of stereotypy: 67.45%).
The environmental enrichment technique could also present op-
portunities for the inclusion of Primary School. The teacher could
create a hierarchy of the student’s favorite objects, activity or toys and
place them in the classroom so that they are easily visible and research-
able. During the intense manifestation of stereotypy, the objects could
be indicated or even presented to the student by the teacher or by the
peers (Sidener et al., 2005).
Finally, we can to consider the analysis conducted by Love et al.
(2012), in which the interruption and redirection techniques RIRD
were applied on two 8 and 9 year-old child with ASD associated with
vocal stereotypies. In this study, the RIRD techniques were combined
with the continuous access to the preferred stimulations. The contin-

uous access to toys was allowed to children; when the vocal stereotypy
appeared, the teacher removed the toy and called the student with his
name, involving him in a process of questions and answers. The com-
bination of RIRD techniques with those of continuous access to the
preferred stimulations resulted in significant reductions in stereotyp-
ies in the participants (percentage reduction of stereotypy: 67.45%).
5. Models based on the consequences
The main meta-analyzes conducted on the topic have identified 10

studies based on the analysis of the effects of interventions carried
out according to the analysis of the consequences (DiGennaro Reed,
Hirst & Hyman, 2012; Mulligan et al., 2014). The interventions con-
sidered are those related to the use of the techniques of interruption
and reorientation of the response (RIRD) and on the Cost of the Re-
sponse. The RIRD techniques have been developed by Ahearn et al.
(2007); they presuppose the involvement of a teacher who presents
questions in line with the verbal repertoire possessed by the student,
when the verbal or behavioral stereotypes appear, until the child re-
sponds consecutively at least three times to the questions instead of
using the stereotype. Each correct answer is immediately follows by
the teacher’s approval (Ahearn et al., 2007; Love et al., 2012).
In the experimental design originally developed by Ahearn et al.
(2007) for the application of RIRD techniques, significant reductions
in vocal stereotypies were observed in a sample of four children with
ASD with a mean age of 7 years. The experimental design included
the interruption of the vocal stereotypies as soon as they appeared,
and the teacher’s involvement in vocalizations that included the par-
ticipant’s name and the reference to simple questions to which the
child was considered capable of responding (For example: What is
this? What is my name?). The appropriate responses followed imme-
diate behaviors of social approval from the teacher. The results indi-
cated a significant reduction in the vocal stereotypies in all subjects,
and an increase in the appropriate vocalizations for three of the four
participants. The rate of reduction in stereotyped behavior ranged
presents a mean of 81% (Ahearn et al., 2007).
In a subsequent study (Ahrens et al., 2011) the use of RIRD tech-
niques was performed on two 4 and 6 year-old children with ASD
associated with verbal and motor stereotypies. The participants were
subjected to a preliminary alternative treatment, in order to verify the

difference with the experimental treatment. In this study, the redi-
rection occurred through two modalities: vocal redirection and mo-
tor redirection. The voice redirection consisted in the involvement of
the child in the vocalization, while the motor redirection consisted
in stopping the stereotype through the involving of the child in sim-
ple motor exercises. Both methods were effective for the reduction
of stereotyped behavior. In particular, the motor redirection was
more effective for the reduction of verbal stereotypies (percentage
of reduction of stereotypy: 94.11%) compared to motor stereotypes
(percentage of reduction of stereotypy: 80.47%). The vocal redirec-
tion, instead, presents the same effectiveness both for the reduction
of the vocal stereotypies (percentage of reduction of the stereotype:
86.28%), and for the reduction of the motor stereotypies (percentage
of reduction of the stereotype: 86.45%). The comparison with the
preliminary alternative treatment also showed a significant difference
in favor of RIRD techniques (Ahrens et al., 2011).
The possibilities offered by RIRD techniques could therefore be
considered in the development of individualized educational pro-
grams for students with ASD characterized by the massive presence of
vocal stereotypies. The teacher could remove the toy or the object of
interest when the student is massively involved in the stereotypy, call
it by name and try to involve him in dialogic processes. The toy or ob-
ject of interest may be provided when the vocal stereotypy decreases.
The RIRD techniques present other opportunities, in addition to the
decrease in stereotypy. They may be able to stimulate the functional
communication skills (Ahearn et al., 2007; 2011; Love et al., 2012;
Mulligan et al., 2014).
In the study conducted by Liu-Gitz & Banda (2010), the tech-
niques to reduce the response were applied in a naturalistic context
represented by the class in which a 10-year-old student with ASD
was included. As soon as the student issued the verbal stereotype, the
teacher interrupted him immediately (interruption) and asked a ques-
tion (redirection) in line with the student’s skills (for example: What
did you do last summer?). During the RIRD intervention, the vocal
stereotypies showed a decrease from 41% to 10%. In this study the
interruption and redirection technique favored a high reduction of vo-
cal stereotypies (percentage of reduction of the stereotype: 96.79%).
The study by Anderson & Le (2011) has instead evaluated the ef-
fects of the Cost of the Response in a 7-year-old child with ASD and
massive vocal stereotypies. The technique involves the removal of a
reinforcing stimulus (for example, listening to music or watching a

video) when stereotypy occurs. Despite the absence of a recording of
the initial baseline level, the use of music has not proved effective for
the reduction of stereotypy, while the interruption of video viewing
has proved effective for the decrease of its frequency.
6. The capacity-based approach
The models of educational intervention based on the teaching of

skills represent an ulterior family of techniques derived from the Func-
tional Analysis of Behavior for the decrease in stereotyped behaviors
and for to improve the functional communication skills. It is evident
their relevance for the educational intervention in the ASD associ-
ated with pervasive vocal or motor stereotypies (Boyd, McDonough
& Bodfish, 2012; DiGennaro Reed, Hirst & Hyman, 2012; Mulligan
et al., 2014). The educational interventions based on Functional Com-
munication Training, on the teaching of self-regulating skills and on
the Differential Reinforcement strategies are sited in this grouping.
One of the first studies related to the capacity-based approach is
that of Kennedy (1994), in which a 10-year-old student with ASD and
multiple motor stereotypies was included in a training oriented to
teaching the communication skills needed to obtain an object desired.
The learning of the effective methods of request makes so marginal
the recourse to the maladaptive behavior used to express the request
(Bondy & Frost, 2002; Mirenda & Iacono, 2009; Boyd, McDonough
& Bodfish, 2012).
Of similar interest is the study by Mancina et al. (2000), based on
the development of self-monitoring and self-regulation skills. In the
study, conducted on a 12-year-old student with ASD and severe vocal
stereotypies, the participant was included in a training for to monitor,
record and self-reinforce their behavior; the training was conducted
by the teacher of the class in which the pupil was included. The devel-
opment of the skills of self-monitoring had positive effects on self-reg-
ulation skills, and the vocal stereotypies were significantly decreased
(percentage of reduction of stereotypy: 80.64%).
A study reported by all the main meta-analyzes is that of Lang et al.
(2010), in which 4 students with ASD and massive motor and manip-
ulative stereotypes, aged between 5-11 years, were submitted to the
teaching of adequate playing skills. In this experimental design, the
intervention phase was preceded by a phases of generic intervention
for to verify the comparison on the reduction of stereotypies. While

the alternative intervention did not have significant effects on their
reduction, the teaching of appropriate playing skills resulted in a de-
crease in repetitive and manipulative behavior (percentage of reduc-
tion of stereotypy: 78, 39%).
Techniques of this order could present high inclusive opportuni-
ties for students with ASD. The possibility of teaching play skills by
the support of the teacher or of the peers thorough the cooperative
learning could form an integral part of the educational strategies for
the decrease in repetitive behaviors. Also the Differential Reinforce-
ment of Other behaviors (DRO) strategies have high levels of effec-
tiveness in reducing stereotyped behavior (Boyd, McDonough &
Bodfish, 2012; Mulligan et al., 2014). The Differential Reinforcement
techniques are configured as non-aversive educational techniques,
based on reinforcing behaviors alternatives to maladaptive ones. The
reinforcement, represented by access to the activities or toys pre-
ferred by the student, is provided only when the stereotypies are not
presents. During the episodes of maladaptive behavior, the reinforce-
ment is never provided (Matson et al., 2012). DRO techniques have
proven effective for the reduction of stereotyped behaviors of vocal
and motor order.
A valid demonstration of their effectiveness can to be deduced
from the study by Nuernberger et al. (2013), in which the goal of
the educational intervention was represented by the reduction of the
behavior of continuous manipulation of hair by a 19-year-old girl with
ASD. The recursive differential reinforcement of behaviors different
from those associated with stereotypy through the access to objects
competitors with the maladaptive behavior, determined its almost to-
tal extinction (percentage of reduction of the stereotype: 98.8%).
A further demonstration of the effectiveness of DRO techniques
comes from the Lanovaz & Argumedes study (2010), which involved a
3-year-old child with ASD and motor stereotyping of introducing ob-
jects into the mouth. The selective reinforcement of behaviors rather
than the maladaptive one has led to a significant reduction (percent-
age reduction of the stereotype: 50.67%). If the use of the Differential
Reinforcement techniques were suspended, a massive reappearance
of the maladaptive behavior was registered (percentage of reduction
of the stereotype: 9.94%).
Final considerations
The present review, although not exhaustive, could provide re-

flective opportunities on the involvement of the techniques derived
directly from the ABA approach in the educational intervention pro-
grams for the students with ASD associated to stereotyped and re-
petitive behaviors of vocal and motor order. The massive presence of
such behaviors in the behavioral profile of the student may represent a
factor that can hinder both the processes of school inclusion (Murphy
et al., 2009; Langen et al., 2011b).
The use of the techniques in the educational contexts of the Pri-
mary and Secondary School, through the regulation of access to toys
or the specific interests of the student, in fact present clear inclusive
opportunities. The techniques indicated should not therefore be con-
sidered only for reducing repetitive behavior, but also in the perspec-
tive of developing the functional communication skills. The develop-
ment of communication and social skills, in turn, is a common goal for
all models of educational intervention aimed at students with ASD.
The reference to techniques that present highest levels of effective-
ness towards the maladaptive and stereotyped behaviors presents, in
other words, inclusive opportunities that could be considered in the
realization of each individualized educational intervention. The use of
the techniques derived from the ABA approach, so, could represent a
non-marginal component of the skills of the support teacher involved
in the processes of Special Education oriented toward the reduction
of the maladaptive behaviors.
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Sexuality and Sex Education in
Autism
Tommaso Fratini 1
Introduction
The clinical and scientific interest in sexuality, sexual behavior, and

sexual education in autism is quite recent. The official discovery of the
autistic syndrome dates back to the Second World War. It was not
until 1981 that Asperger’s syndrome was re-evaluated by Lorna Wing
(1981), and not until the 1990s that it began to spread among clinical
diagnoses. Autism was immediately considered a serious disorder in
social interaction and interpersonal communication. With reference
to autism, even the fourth edition of the DSM spoke of an absence of
emotional reactions. Under these conditions, it is understandable that
there has been a rather modest interest in sexuality in autism for sev-
eral decades. More than anything else, sexual behavior in autism was
considered a problem to be managed in cases where it was relatively
dysfunctional and inadequate thus undermining the normal nature of
the individual’s interpersonal conduct based on the canons of conven-
tional morality.
We must recognize that only psychoanalysis has always maintained
an important focus on sexuality, even of autistic individuals. Indeed,
starting from Freud, the place occupied by sexuality in psychoanalytic
theory has produced the effect that sexuality, even in the psychother-
apeutic treatment of autistic subjects, has maintained a prominent po-
sition in understanding the disorder and in exploring the psychic life
and the internal world of people with autism.
Today it seems difficult to deny the fact that, without exception, all
subjects with autism spectrum disorder (ASD) potentially experience
sexual impulses. Many desire a sexual life and they have the right to
live and express their own sexuality (Cabral Fernandes et al., 2016).
1
University of Florence.
In a certain way we are witnessing a contradiction that is mani-

fested in the study and way of dealing with the question of sexuality in
autism. The key concept of the new Inclusive Education model (e.g.,
Mitchell, 2015), which is taking shape internationally, whose key con-
cepts expresses a focus on all the differences (Cottini, 2017). More-
over, it supports the importance of an environment that fits the needs
of all individuals, starting with those with disabilities. In this light,
disability is understood primarily in relation to the concept of those
physical and even social obstacles that place limits and restrictions on
individual functioning (Booth, Ainscow, 2011).
However, the sex education measures we make available for au-
tism are placed in a perspective that we could otherwise define as
conservative. What we try to teach as much as possible to individuals
with ASD are those social rules that favor the integrity of the modesty
barrier about sexuality. Alternatively, we should consider the subjects
that break this barrier abnormal and susceptible owing to this of be-
ing excluded and placed on the margins of society. This occurs when
the interest for the expression of an often problematic yet no less au-
thentic sexuality is downplayed.
In developing this viewpoint throughout this chapter, we will see
how it is fundamental to favor an intermediate, mediatory position.
Moreover, social rules relating to sexuality must be taught to subjects
with ASD, which has valuable beginning immediately and as soon as
possible in the evolutionary arc, so that they can accept these rules
and get used to adapting to them.
On the other hand, however, it is equally essential that the person
with ASD can express his own sexuality, perhaps with some bizarre,
but nevertheless rich aspects and the expression of a free, vital mind
seeking to realize his own identity and personality.
1. Characteristics of sexuality in autistic mental functioning
As previously mentioned, the sexuality of subjects with ASD has

been and still is largely denied and misunderstood on a social level
(Byers et al., 2013). Moreover, it is like the sexuality of other disabled
subjects, especially those with intellectual deficits. There are multiple
reasons for this prejudice, but, firstly, in the sense of disgust and per-
turbing ambivalence that sexuality in disability arouses in the average
individual. There is the right to express sexuality even in conditions
of impairment and disability (Fratini, 2016). From the viewpoint of
Sexuality and Sex Education in Autism 117
conventional morality, there is still a long way to go to fully accept a

sexuality that is expressed in non-canonical conditions. Another ex-
ample applies to the sexuality of homosexuals, but especially to el-
derly people, who, according to conventional morality, are thought
now to be sexless and unable to abandon themselves to the uncanny
pleasure of sexuality. A pleasure that in similar conditions is assumed
to be perverse and therefore capable of inducing an automatic reac-
tion of disgust.
Indeed, it is certainly true that sexuality poses formidable prob-
lems for understanding mental functioning in autism. A subject with
ASD is in great difficulty when faced with any kind of social stimula-
tion. A person with autism – by definition a form of disability in social
interaction and communication, with a restricted and repetitive reper-
toire of interests – theoretically should not express a true erotic desire.
People with ASD, at any level of functioning, reveal little interest in
dealing with other people. They may not greet other people or look
into their eyes. They often do not give the impression of recognizing
others, and do not show any expression of interest and desire for in-
terpersonal contact.
Yet sexuality is present in individuals with ASD. Not only do peo-
ple with ASD undergo pubertal development, with all its physical,
biological, and hormonal changes, but they also show the characteris-
tics of sexual excitement: penile erection in males, vaginal and clitoral
lubrication in females.
According to a restrictive view, one might be led to imagine that,
in a subject with ASD, there is potential sexual excitement, in the
absence of true erotic desire. Unlike sexual excitement, erotic desire
presupposes affective investment in reality or fantasy of a real person,
as someone other than oneself, culminating in the biologically deter-
mined orgasmic response (Kernberg, 1995). Autism’s response would
therefore be a sexuality that is not subject to sexual excitement. A split
sexuality expressed in the spaces left free by the limitations of autistic
pathology, where a subject with intermittent ASD has the possibility
of leaving the withdrawal states typical of autistic mental functioning.
Let us recall that there is no mechanism in autism that is all or noth-
ing (Barale & Ucelli, 2006). Autism places very serious limitations on
social interaction and consequently on intellectual functioning, but
these limitations are not always permanent. At certain times, the indi-
vidual almost miraculously emerges from the autistic mental function-
ing and is able to show what are called “islands of capacity” in jargon.
They are sometimes particular talents, whose root is still mysterious,
yet which are the expression of a very particular and peculiar mental
functioning.
Sexuality certainly has a place in the context of this functioning. In-
deed, it is a sexuality strongly limited by the obstacles imposed by the
autistic pathology. Subjects with ASD have difficulty with theory of
mind, empathizing, and grasping other people’s points of view (e.g.,
Stokes & Kaur, 2005), indispensable for having a sexual interest, but
especially for falling and being in love.
While puberty in autism develops regularly, the same cannot be
said for adolescence as a social and psychosexual phenomenon. The
characteristics of normal adolescence, with the working trough of
grief for the end of childhood, separation from parents, and access
to the “social container” provided by the peer group almost always
preclude subjects with ASD.
In fact, autism is characterized by a peculiar social isolation that
is, nevertheless, sought by the autistic subject, preventing those rela-
tionships of comparison to the same age group that are an important
source of social experimentation for sexual purposes and typical of
normal adolescents.
Despite these limitations, clinical observation has shown that in-
dividuals with ASD do have a sexual life; they experience sexual im-
pulses. However, the most recent studies also demonstrate something
more: a declared interest on the part of autistic adolescents and young
people towards a couple’s sexual relations and romantic love (Strunz
et al., 2017).
In fact, the issue of sexuality in autism still faces many prejudices
today. One very important prejudice is that these individuals would
be incapable of experiencing real intimacy in a loving and sentimental
dyadic relationship with another person. The lack of empathy and of
theory of mind would block the possibility of any intimate emotional
relationship (Stokes & Kaur, 2005).
Another prejudice is that the sexuality of these subjects is unequiv-
ocally perverse and thus to be discouraged rather than encouraged. In
this regard, the fact that there is a higher percentage of homosexuals
and bisexuals in subjects with ASD than in the normal population is
controversial (Turner, Briken & Schöttle, 2017). According to some
research, the population of people with ASD has a greater percentage
of individuals that are homosexual and bisexual in addition to those
claiming to have various forms of paraphilia. The percentages are
however low and limited to a range that does not appear so different
from those in the neurotypical population.
The presence of homosexuality in autism can be explained as linked

to the fact that, in some cases, the sexuality of subjects with ASD, in
some ways, would be immature, blocked at a perverse-polymorphic
stage like the one theorized by Freud (1905). More than a question
of true homosexuality, it would be one of a sexuality struggling to
be emancipated towards the adult stage, owing to the considerable
obstacles imposed by the mechanisms of autistic mental functioning
as a limit to the development of a harmonious and mature personality.
2. Sexual education in autism
As social awareness of sexuality in autism has grown, the concept

of a need for sexual education for people with ASD has been increas-
ingly articulated. This is important for both high-functioning and low-
er-functioning autistics. Contrary to prejudices and to what might be
mistakenly thought, people with ASD not only have a sexuality but
also a capacity to learn social and sexual rules, if they only have the
opportunity to meet people who have the patience to teach them.
Sexual education is made necessary because the neurotypical child
and adolescent’s intuition and spontaneous learning in many cases
must instead be taught to and systematically learned by the subject
with ASD.
Sexuality education also in autism is therefore something that can
be taught, even if it is appropriate here to clarify something. Sex ed-
ucation cannot be resolved by the person with ASD merely by at-
tending a training course. It must necessarily begin much earlier, es-
sentially beginning in childhood (Dagna & Margaria, 2016), and the
parents’ attitude and disposition plays a fundamental role in this.
In this regard, it should be noted that many parents are still unpre-
pared to face a serious discussion on the sexuality of their children
with ASD. They are somewhat reluctant and incompetent in this area
(Ballan, 2012). The parents’ incompetence is certainly understandable
in the face of this demanding task, but it also covers the fundamental
issue regarding the sense of guilt that the parents inevitably have to-
wards a child with ASD.
This sense of guilt is a defense against the psychic pain that the
parents feel towards the disability affecting their autistic child. From
this, an attitude develops that infantilizes the child along with a be-
lief that, with the passing years, the child increasingly suffers. Indeed,
the recognition of sexuality is closely linked to an idea of growth and
change. Many parents still prefer to think that a condition in which

their child is strictly dependent on them is preferable to one in which,
to the extent possible, the child gradually becomes autonomous and
independent. The parents’ overprotectiveness of a child with ASD is
always a problem to take into consideration and one that can intensify
their own child’s social disadvantage.
It is necessary to pause on the overall theme of the complexity of
sexual education for an individual with ASD. As mentioned, the com-
plexity is such that the parents’ continued commitment from the early
stages of the child’s development should be required.
Moreover, sex education in autism should consider various aspects
and seriously address numerous issues.
One aspect entails the difficulty of subjects with ASD to distin-
guish between public and private (Ballan, 2012; Stokes, Newton &
Kaur, 2007). Individuals with ASD very often find it difficult to dis-
tinguish between public behavior and private behavior and between
parts of their own body and those of other people, those parts that
can be exhibited and touched and those that must remain covered
or protected in public behavior. A person with ASD may discover
or touch their own genitals in public, or likewise touch the intimate
parts of other people. Individuals with ASD also may not be able to
distinguish between kisses and affection towards people they know
and with whom they have an intimate relationship from contact with
strangers with whom the modesty barrier cannot be broken (Realm-
uto & Ruble, 1999).
The “social blindness” typical of autism means that these behav-
iors, which are not perceived and understood spontaneously, must be
specifically learned by individuals with ASD. The risk in this case can
be to the point of accusing an autistic person of obscene acts in public
places (Dagna & Margaria, 2016).
There are two other essential risks for people with ASD that need
to be addressed and for which sex education is needed. For females,
there is the risk of unwanted pregnancies. Sex education from this
point of view must cover the risk of pregnancy and an explanation to
the girl on the importance of using contraceptives and condoms as a
way to deal with this risk.
The second, very important risk is sexual abuse. People with ASD,
especially those at a low-functioning level, may not be able to cope
with sexual abuse (Sevlever et al., 2013). Not only may they not be
able to defend themselves from the abuser, they may also not be able
to describe and report the abuse immediately. Due to their candor,
naivety, and social incompetence, people with ASD can easily be cho-
sen by unscrupulous individuals who can commit sexual abuse.
From this point of view, to combat the risk of sexual abuse, it
should be noted that abusers are very often people who are part of
the immediate circle of those spending time and interacting socially
with the person with ASD on a daily basis (Reynolds, 2013). Careful
monitoring of these people’s conduct can be one way to reduce the
risk factor associated with sexual abuse.
A third risk is linked to sexually transmitted diseases. Again, in this
case, male and female subjects with ASD should be informed about
the danger of contracting a disease and be encouraged to use condoms.
Another essential aspect of sex education is related to personal hy-
giene. Parents should teach their children with ASD both to take care
of the hygiene of their private parts and to be aware of a number of
other important aspects. Reynolds (2013) has listed some important
elements on this point that take the personal hygiene of adolescents
with ASD into consideration. Some examples are the male’s ability to
learn how to shave facial hair and to urinate in the correct standing
position and a female’s to learn how to remove body hair and to use
sanitary pads during the menstrual cycle.
Parents of children with ASD should explain the fact that a male’s
voice goes through a change and that parts of the body, e.g., breasts in
females, undergo a transformation.
An additional element in a relationship with one’s body is to learn
privacy and secrecy. Many parents are reluctant to teach their child
with ASD to sleep alone. Instead, they should do their best to teach
the child to sleep in their own room and to try to make them under-
stand that this can be a private space where the child can pursue his
own intimacy and secrecy.
With the advent of puberty, this secrecy essentially concerns the dis-
covery of secretions from one’s own body (Novelletto, 2009). Since the
individual with ASD cannot learn these concepts from his peer group
as he tends to be excluded, it is up to the parents to teach these facts to
their child. Privacy is a central concept of adolescence and adulthood
that could and should be appropriately taught to a person with ASD.
Another aspect of sexual education that should be taught to sub-
jects with ASD concerns inhibiting exhibitionist behavior, which may
include touching oneself or even masturbation in public, stripping,
and an inability to understand other people’s need for privacy. From
this point of view, the issue also answers the fundamental question
of what is and is not appropriate in a given situation. This concept,
which neurotypical people understand spontaneously, can be difficult

for a person with ASD to acquire and must be taught and learned.
We enter the world of friendships at the same age and into sen-
timental relationships with our contemporaries. Naturally, this can
mean coming to terms with a world that imposes powerful frustra-
tions on people with ASD. The complicated relationship of ambiva-
lence created in sentimental and intimate relationships with people of
the opposite sex, similarly to same sex relationships, can cause misun-
derstandings and intense frustration on the part of adolescents with
ASD. They must learn to understand the concept of rejection by the
other and also learn how to tolerate and manage it. This can be the
source and cause of great psychic pain.
Moreover, like all emotionally immature people, people with ASD
may tend to idealize greatly the objects of their sexual and loving de-
sire. All this exposes them to greater disappointment when they ex-
perience rejection.
If parents play an essential role in also the sexual education of their
ASD child, this does not mean that clinical specialists, educationalists,
and researchers cannot develop a good sex education program.
Gradually, valid sex education programs for people with high- and
low-functioning ASD are springing up. Some of these programs have
also been validated and have a high degree of empirical confirmation
(e.g., Visser et al., 2017).
One of these programs is Tackling Teenage Training, whose acro-
nym is TTT (Boudesteijn et al., 2011). This is a program developed
expressly for adolescents with high-functioning ASD. The basic as-
sumption driving the concept developed by the program is to regard
sexual functioning as a complex construct that integrates diverse as-
pects. It considers not only the sexual act and knowledge of sexual
apparati, in addition to intimate hygiene, knowledge of one’s own
changing body that extends to facts and Self-awareness, together with
the resolve to have peer-group socialization experiences, up to inti-
macy in sexual relations and romantic love (Dekker et al., 2015).
Sex education programs conducted by educational specialists
should now be considered. Attending a course for only a few hours
can be used to convey some ideas to individuals with ASD about the
functioning of their body and of sexual relations. However, for indi-
viduals with ASD to fully learn to manage the potential of their sexual
functioning, it can naturally take a long time. As mentioned, it is the
parents’ as well as the specialists’ input that can make an important
contribution in this long fundamental process.
They can develop special settings in which learning the facts and
skills of sexuality can be carried out agreeably in a climate where ad-
olescents or even adults with ASD can experiment in the context of
pleasant relations.
To do this, a specific setting should be organized: a room in which
to meet regularly and to hold regular, i.e., weekly, meetings and not
for too short a period of time. The lessons could include using social
stories and simulating situations in which intimate contact occurs be-
tween the participants.
In fact, the last chapter in the sexual education of individuals with
ASD fades in the normal social interaction between people, who
meet, get to know each other, and have an intimate affective sexual
relationship, either heterosexual or even homosexual.
As Moscone (2016) writes in his introduction to Sarah Attwood’s
sex-education manual for subjects with Asperger’s syndrome (At-
twood, 2008, p. 10):
Any sex education program must therefore enable people to make in-
formed, conscious choices and to act responsibly towards themselves and
their partners; have an awareness and knowledge of the human body; be able
to express feelings and needs; develop one’s own sexual identity; acquire ade-
quate information on physical health, hygiene, and the prevention of sexually
transmitted diseases; have the necessary skills to manage all aspects of sexu-
ality and relationships; establish equal relationships in which there is mutual
understanding and respect for shared needs and boundaries; be able to talk
about sexuality, emotions, and relationships; and have the right language
available.
From this point of view, the first, groundbreaking research is

emerging that highlights the need for romantic relationships on the
part of high-functioning subjects with ASD (Strunz et al., 2016). By
debunking the prejudice those individuals with ASD lack emotional
reactions, such research has increasingly shed light on the fact that
many people with ASD want a romantic relationship and are willing
to engage in such relationships. This shows that particularly women
with ASD, more than men, have already engaged in such relation-
ships to a greater extent than we might think based on prejudice
(Strunz et al., 2016).
Many people with ASD are involved in a relationship, either with
other autistic partners or with neurotypical people. However, one as-
pect that still seems to be covered by negation mechanisms and denial
is the experience of coitus. There are many discussions in sexual edu-
cation manuals on people with ASD preparing for sexual intercourse.

Nevertheless, actual experiencing the sexual act still seems to be hid-
den by a wall of reluctance in field research. Do people with ASD
eventually have sexual relations? Moreover, if so, are they gratifying?
It is this question that we increasingly deserve to have an answer from
future research.
3. Sexuality in autism and psychotherapy
Psychotherapy is a complex, highly specialized area, whose vast

body of literature on the treatment of autistic people has existed for
many decades. A discussion on autistic psychotherapy is largely out-
side the scope of this paper. Suffice it to briefly mention the fact that
it is significantly linked to the contribution of psychoanalysis, which
has received much criticism for its psychogenic etiopathogenic con-
siderations of autism’s causes and origins, and which today still tends
to be viewed with suspicion because of its contrary approach to evi-
dence-based research.
However, a careful analysis of the clinical contributions of psycho-
analytic psychotherapy of autistic children, adolescents, and adults
displays a wealth of ideas and contributions, especially from the point
of view of people with ASD exploring from within their subjective
experiences.
We may argue that good psychotherapy can be a valuable added
contribution to the treatment and overall management of people with
high- and low-functioning ASD. Psychotherapy works primarily by
improving the capacity for symbolization and mentalization (Fon-
agy & Target, 2001). This can promote the personality’s harmoni-
ous growth. The elements and channels along which psychotherapy
acts are therefore linked also to the management and reduction of
aggression and problem behaviors, a greater Self-awareness and con-
sciousness, a better relationship with one’s own sexual body, working
through mourning for the psychic pain of one’s personal history, and
a more detached, differentiated view of oneself in relation to one’s
parents.
In short, psychotherapy can foster greater autonomy for people
with ASD and thus also prepare them for the experience of sexual
love and of encountering a partner in a rewarding and fruitful loving
relationship.
Conclusions
Concluding this chapter, we can assert that this recognition of sex-

uality and sexual needs in autism indicates how much progress has
been made since the first research on the syndrome, and how much
still is to be done in terms of an ever more complete emancipation of
subjects with ASD, starting in adolescence and then gradually increas-
ing into adulthood.
We began this chapter by stating critically how it is a challenge to
the concept of inclusion subjects with ASD to fully recognize their
sexuality. In fact, it would be a mistake to support as a correct educa-
tion of the person with ASD passes through in all respects following
those social conventions that our society of adults and adolescents,
even rather inflexibly, demands. One limitation of such neo-behav-
ioral approaches as the ABA method (Lovaas, 1981) is perhaps over
insisting on an educational and rehabilitative treatment of the person
with ASD in faithful function of his social adaptation.
We know that there remains a bit of madness and oddness at all
functioning levels of autism. We advocate for these aspects to also be
accepted and valued for purposes of social inclusion and the psycho-af-
fective well-being of people with ASD. Most people with ASD from
autism cannot be cured. However, this does not mean that they cannot
learn many things about life, human relationships, and sexuality in par-
ticular. Autistic people are clearly entitled to fall in love and experience
their sexuality, which is also owing to their support experiences.
The sex education model we have in mind is not limited to impart-
ing knowledge to subjects with ASD. It must aim for something more
and not merely for the individual to become familiar with his own sex-
uality, but also to prepare and encourage sexual encounters between
people with or without ASD.
Undoubtedly, the frontier of the future is towards the ever increas-
ing social inclusion of autistic people. This means setting up, creating,
and developing opportunities in which people with ASD, males and
females, may meet to find and experience sex that consider the mo-
ment of exchange and sexual intercourse.
Furthermore, what is the use of learning an extensive rulebook
on sexuality, if it is not directed at an experience of sexual love? At
the same time, we cannot expect that autistic people’s experience of
sexuality, like life and human relations in general, conforms fully to
the rules that the neurotypical community has adopted to experience
normal social relationships.
The ideal would be if people with ASD could experience romantic

relationships with neurotypical people, which would gradually help
them to better understand themselves and to take important steps
towards autonomy, alleviating the pressure and constant anxiety of
being different from the others and having many problems.
However, even the experience of a relationship between partners,
both with ASD, can be important, and to foster and encourage the
current situation. Two people with ASD having a relationship can
accept each other’s problems more easily. They may feel less perfor-
mance anxiety, fear of abandonment, and anxiety about being judged
“strange” because of their autistic traits and behaviors.
Lawson (2005) pointed out an important feature of autistic behav-
ior in a loving relationship: monotropism. Individuals with ASD are
less able to tolerate ambivalence in a romance. They need to have one
experience at a time during the day and may suffer mental overload
when the relationship becomes more complex and other contradic-
tory elements tend to come into play.
However, people with ASD fall in love, experience sexual im-
pulses, albeit in unusual ways at times. We hope that they can in-
creasingly have the experience of a gratifying emotional and sexual
relationship.
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The Autistic Spectrum Disorder
and the Quality of Life.
Researches, Instruments, Results
Atalia Onițiu, Melinda Dincă, Daniel Lucheș
Introduction
The Autistic Spectrum Disorder (ASD) is currently one of the

most common developmental disorders, with an incidence of 1 to 59
children, affecting five times more boys than girls (information avail-
able online at https://www.psychiatry.org/patients-families/autism/
what-is-autism-spectrum-disorder), whose symptoms appear early
in childhood (12-18 months), with symptoms most commonly seen
around the age of 2-3 years.
According to the Diagnostic and Statistical Manual of Mental Dis-
orders (DSM 5), developed by the American Psychiatric Association,
the autistic spectrum disorder is characterized by: socio-emotional de-
ficiencies (regarding involvement in conversations, sharing emotions
and feelings, initiation or response to social interaction); deficiencies in
non-verbal communication (visual contact, mimic-gestural language,
lack of facial expressions; deficiencies in developing, maintaining and
understanding relationships (difficulties in playing with other children
or making friends, lack of interest in other children). To these deficien-
cies are added repetitive, stereotypical behaviors, fixations, inflexibility
regarding the deviation from the routine (APA, 2013: 50-51).
Quality of life is a concept used for the first time in the United States
of America after World War II to describe the effect that well-being
(defined by the possession of houses, cars and other consumer goods)
has on people’s lives, term later on extended on other areas, such as
education or health (Carr, Thompson & Kirwan, 1996: 275; Kumar,
2018: 30). In the socio-medical literature, the term has often been
considered synonymous with life satisfaction, self-esteem, well-being,
happiness, health, value of life, meaning of life (Kumar, 2018: 30).
Quality of life is a multidimensional, dynamic concept that can un-
dergo changes throughout the lives of individuals. From the perspec-
tive of the World Health Organization, the quality of life is defined as:
… an individual’s perception of their position in life in the context of the
culture and value systems in which they live and in relation to their goals,
expectations, and standards and concerns. It is a broad-ranging concept af-
fected in a complex way by the person’s physical health, psychological state,
level of independence, social relationships, and their relationships to salient
features of their environment (apud Carr, Higginson & Robinson, 2003).
By the quality of life we can understand the degree of satisfaction that
a person has towards the dimensions of his life, compared to what con-
stitutes, for that person, the ideal, in close relation with the cultural and
value system to which the individual relates. Any change in living condi-
tions (health, occupation, freedom of action or expression) can induce a
change in the image regarding the quality of life (Kumar, 2018: 30-31).
Robert Schalock states (Schalock, 2000), that the origins of the
concept of quality of life lie in the actions undertaken in the field
of services, education and health for people with mental disabilities,
being widely used in medicine (apud Plimley, 2007: 205). The same
author (Schalock, 1996, apud Plimley, 2007: 207) considers that there
are eight dimensions of the concept, namely: physical well-being, ma-
terial well-being, interpersonal relations, social inclusion, personal de-
velopment, self-determination, emotional well-being and rights.
From a sociological perspective, the research of the quality of life
follows the living conditions of the individuals and their perceptions
on these conditions (Precupețu, Preoteasa & Pop, 2007: 197). Ac-
cording to the ICCV (ICCV, 2017),
quality of life is the value for man of his life; how good or bad is the life he
lives, both as a whole, and on his particular components: health status, family,
profession and work place, available financial resources, assets he owns, lei-
sure time, social environment, friends and colleagues, the society in which he
lives. Quality of life represents the global, synthetic quality of all conditions
and spheres of which life is composed; the degree to which life produces
satisfaction.
Quality of life research is institutionalized in 1995, with the es-
tablishment of the International Society for Quality of Life Studies
(Veenhoven, 2007: 54). In Romania, quality of life is a favorite area for
the research carried out by the Institute for Quality of Life Research
(ICCV); quality of life indicators have been introduced since the 70s,
both objective (income, consumption, living conditions, environmen-
tal quality) and subjective (indicators of life satisfaction, indicators of
perceived quality of life in its different spheres) (ICCV, 2017).
The Autistic Spectrum Disorder and the Quality of Life 131
In the studies undertaken on the quality of life of people with ASD,

health issues were mainly addressed, from a socio-medical point of
view the quality of life being related to terms such as: satisfaction,
self-esteem, happiness, well-being, wealth, value, adaptation (Carr,
Thompson & Kirwan, 1996: 275).
The present approach aims to analyze, without pretending to be
exhaustive, the existing literature to date, in order to create an over-
view on the research undertaken on the quality of life of people with
ASD (especially children), on the methodology used and of the results
of these researches. That it cannot be an exhaustive research is evident
from the reading of a previous study (Ikeda, Hinckson & Krägeloh,
2013), which identified in online databases (MEDLINE, CINAHL
Plus, SPORTDiscus, EBSCO Health Database, PsycINFO and Pro-
Quest Health and Medicine), for the period 2000-2013, a total of
1165 titles of articles written in English and German, available in full
text, analyzing the quality of life of children and young people with
TSA. However, categorically, the published researches and studies
are much more numerous.
Studies on researches on the quality of life of people with ASD
can be classified into two categories: studies that directly investigate
the quality of life of the person diagnosed with ASD (Kuhlthau et al.,
2010; Egilson et al., 2017) and studies that track the quality of life of
families with children with ASD (Cashin, 2004; Church, 2006; Kheir
et al., 2012; Hoefman et al., 2014), the impact that a child’s diagnosis
has on caregivers. In this second category, a sub-category can be iden-
tified, which receives special attention from researchers, namely the
quality of life of mothers with children with ASD (Boyd, 2002; Salehi
et al., 2017). Another observation that emerges from the literature
analysis is the tendency to analyze the quality of life in the compara-
tive register (children with ASD - neurotypical children), to compare
the scores and results recorded by the two categories and to conclude
accordingly (Boyd, 2002; Church, 2006; Egilson et al., 2017).
1. Researches on the quality of life of children with ASD
Communication deficiencies, non-verbalism or difficulties in initi-

ating and involving children with ASD in social interactions are major
impediments in conducting direct studies on this category of children.
For this reason, the direct investigation of the quality of life of chil-
dren with ASD is carried out in most cases by analyzing the parents’
point of view. Some exceptions (Egilson et al., 2017) may be encoun-

tered in the case of verbal children with highly functional autism, who
have the ability to understand and respond and thus to provide their
own perspective on their life.
Ikeda, Hinckson and Krägeloh (2013) consider that, since the per-
ception of quality of life is subjective and personal, it is preferable
to obtain direct answers, and not from the proximity of the child,
although, as we have already mentioned, this fact is most often im-
possible.
A special category is that of young people with highly functional
ASD or Asperger’s syndrome, whose personal image on their quality of
life has been the subject of several studies. A first study (Jennes-Cous-
sens, Magill-Evans & Konin, 2006, after Burgess & Turkstra, 2010:
476-477) compared the values recorded by 12 youths with ASD with
those of 13 neurotypical youths, using the WHOQOL-BREF ques-
tionnaire, finding overall lower values registered by young people
with ASD, with significant differences in physical health and social
relations. Renty & Roeyers (2006) (after Burgess, Turkstra, 2010: 477)
used the Quality of Life Questionnaire (QoL.Q) to investigate the
quality of life of a sample of 58 youths with ASD. QoL.Q is a stan-
dardized tool, comprising 40 items classified in four areas: satisfac-
tion, well-being, social belonging and control. The very interesting
conclusions of the study showed that for adults with ASD the severity
of the disorder or the coefficient of intelligence are not capable of af-
fecting their quality of life; instead it is observed that the asymmetry of
perceptions between the desired social support and the one received
negatively affects the quality of life of these subjects.
Adolescents with high-functioning autism/Asperger’s syndrome
have been the subject of a study in the United States, on a group of 15
young people (reported to a control group with an equivalent number
of subjects) (Burgess & Turkstra, 2010). The instrument used was the
Quality of Communication Life Scale (QoCL), a questionnaire with
18 items, of which 17 specific statements, the 18th being a summative
assessment of the quality of life. For each of the 18 statements the
subjects must give grades from 1 to 5 (Burgess & Turkstra, 2010: 479).
The statistical data showed lower values for the subjects diagnosed
with ASD, compared with the neurotypical ones, also lower scores for
the answers offered by parents, compared with those of the children.
Surprisingly, no significant differences are found between adolescents
with ASD and neurotypical ones regarding the values recorded in the
summative statement “In general the quality of my life is good”, val-
ues that in both cases were high, compared to the scores obtained by
the young people with ASD on the other 17 statements. The possible
explanations identified by the researchers lie either in the fact that
young people tend to give positive answers to questions that concern
abstract concepts, rather than to those that involve concrete situa-
tions, or that the overall quality of life is not negatively influenced by
the difficulties with which young people with ASD face (Burgess &
Turkstra, 2010: 482).
Figure 1 (after Burgess &Turkstra, 2010: 481)
Another study we will refer to was conducted in 2010 on a sample of

286 children from 15 centers in the United States and Canada (Kuhl-
thau et al., 2010). It is the first study to track the quality of life of chil-
dren with ASD in the United States and Canada (Kuhlthau et al., 2010:
728). The study focused exclusively on the quality of life defined from
a socio-medical point of view, comparing the values recorded by chil-
dren with ASD with the values recorded by neurotypical, healthy chil-
dren, but also children suffering from other chronic conditions, from
official data, statistically recorded. Information on the quality of life of
children with ASD was collected from parents through a standardized
questionnaire. The Pediatric Quality of Life Inventory - PedsQL is a
23-item questionnaire, applicable to children aged 2-18 years, which
assesses four dimensions of the quality of life, namely: physical, emo-
tional, social and school performance (Kuhlthau et al., 2010: 723). It
is one of the most used tools used to investigate the quality of life of
children with TSA (according to Ikeda, Hinckson & Krägeloh: 2013).

Statistical analyzes revealed significant differences between the cate-
gories of children, with values for total net inferior in the case of chil-
dren with ASD. For two dimensions, namely physical condition and
school performance, the scores were somewhat comparative between
children with ASD and those with chronic conditions (Kuhlthau et
al., 2010: 726). A very important variable that significantly changed
the responses provided by parents was the age of the child, the older
the child was, the lower the recorded values, the possible explanations
being the cumulative stress of the parents, the evolution or the lack of
progress of the child in time (Kuhlthau et al., 2010: 728).
In Iceland, a study was conducted on 96 children with ASDTSA,
whose values were compared with those of a group of 211 neurotyp-
ical children. Respondents were mostly mothers (89.6% for children
with ASD and 86.3% for neurotypical children) (Egilson et al., 2017:
134). The tool used in the research was KIDSCREEN-27, a standard-
ized questionnaire, which emphasizes not only the capabilities of the
child (as in the case of PedsQL), but also the subjective side, what
the child feels, an aspect considered relevant by the researchers in
order to outline a most suggestive image of the quality of life of these
children (Egilson et al., 2017: 134). The research revealed statistically
significant differences between the two categories of children, with
low values recorded by children with ASD in indicators such as: so-
cial support, physical health, support from the elderly (Egilson et al.,
2017: 136). What is extremely interesting and remarkable about this
study is that it compared four perspectives, sometimes distinct, some-
times complementary, namely the parents’ perspective (children with
ASD and neurotypical children), and the perspective of children (with
highly functional and neurotypical), as can be seen from Figure 2.
As can be seen from the graph, except for autonomy and relation-
ships with parents, where both children with ASD and their parents
recorded similar values, the means of responses to the other four di-
mensions recorded significant differences, the children having higher
values, thus a better image than their parents (Egilson et al., 2017:
138). Interesting is the difference in perception in the case of neuro-
typical children and their parents, again the values recorded in the
answers offered by children being higher.
Another very important finding that emerges from the analysis of
the statistical data is the fact that, despite all the difficulties and prob-
lems, especially related to physical health (where the values recorded
are the lowest), the lack of social support, the lack of friends or the
Figure 2 (after Egilson et al., 2017: 136, fig. 1)
difficult relationship with those of the same age, the highest values
were recorded by children with ASD in the emotional health chapter.
In 2017, a report was published on the quality of life of children
with TSA in Spain, following a research undertaken on a number of
1060 young people, of which 64.2% boys, aged between 4 and 21
years (Arias et al., 2017). In order to measure the quality of their life,
from the perspective of the eight areas defined by R. Schalock, a 96-
item questionnaire was designed to be completed by those close to
the child (family, teachers, therapists). Each of the 8 domains are as-
signed 12 questions, whose answers are recorded in the form of a scale
with four answer variants (never, sometimes, often, always), scored
from 1 to 4. The total score is directly proportional to the quality of
life (the higher the score, the higher the quality of life is considered).
In conducting the research, the authors started from the hypothesis
that not always the quality of life is affected by the diagnosis, but by
other factors, such as gender, severity of intellectual disability or the
services they benefit, hypothesis that is confirmed by the lower values
recorded in the questionnaires regarding for girls and those with se-
vere intellectual disabilities.
The latest study (Kumar, 2018) was conducted in India, on a sam-
ple of 60 people (30 parents with children diagnosed with ASD and
30 parents with neurotypical children). Standardized tools were used
in the research, such as: the General Health Questionnaire (GHQ-
28), a 28-item instrument developed in 1978, used to investigate
the psychological effects that a child’s diagnosis has on his parents;

WHOQOL-BREF (the World Health Organization Quality of Life),
made in 1998, contains 26 items and has been used to measure par-
ents’ perceptions of their lives in relation to their standards, goals,
expectations and concerns; the Family Interview Schedule comprises
14 items, being used to measure the degree to which parents of chil-
dren with ASD experience stigma (difficulties with neighbors, shame,
guilt, depression) (Kumar, 2018: 31-32). Following the application of
GHQ-28, it was observed that the parents of children with ASD suf-
fer from psychological disorders significantly higher than the parents
of the neurotypical children; significant differences between the two
categories of parents were also observed after applying WHOQO-
L-BREF, on the social relations indicator. Following the application
of the Family Interview Schedule, it was found that the diagnosis of
the child does not have a negative impact on the quality of life of the
parents, but the higher the age of the child, the higher the scores reg-
istered by the parents regarding the stigma (Kumar, 2018: 33).
2. Researches on the quality of life of families of children

with ASD
All the studies undertaken so far have been based on the hypoth-
esis that the families of children diagnosed with autism have a lower
quality of life than those of the families of the neurotypical children,
facing many shortcomings (financial, including a high level of stress,
anxiety and other medical problems) and benefiting from insufficient
social support, the family, and especially the core family (mother-
father), is the one who fully takes care of the autistic child, including
the financial effort needed to recover (Church, 2006; Boyd, 2002).
Families with children with autism face numerous problems: an-
ger/disruptive behaviors; obsessions, broad or narrow interests; with-
drawal or depression; lack of motivation; weak autonomy and organi-
zational skills; strange behaviors in communities or legal issues (Gaus,
2010). By becoming almost totally involved in the care and recovery
of the child, parents often give up themselves, limiting all other ac-
tivities, facing social isolation, partly assumed, partly caused by the
child’s failure to be accepted in some environments (Cashin, 2004;
Perumal et al., 2014: 791). In many situations, the diagnosis of the
child is not only a challenge, but even a burden for families, forced to
change their entire way of life (Kheir et al., 2012: 2).
In some studies, the analysis of statistical data revealed a very in-

teresting conclusion, namely that sometimes families of children with
autism reach a level of adaptation and resilience that allows them to
record quality of life values comparable to those of families of neuro-
typical children (Church, 2006).
A research conducted in Qatar (the first of its kind here), on a
number of 98 subjects, of which 56 parents of children with ASD
and 42 parents of neurotypical children (Kheir et al., 2012), revealed
that there are no statistical differences significant in terms of quality
of life between the two categories of parents, but parents of children
with ASD showed significant differences in their health, considered
increasingly precarious (Kheir et al., 2012: 1). The averages recorded
in the mental health chapter were smaller than those recorded in the
physical health, although no significant statistical differences were ob-
served between the two. An interesting finding of the study is that
57% of children with ASD are educated in special schools, those who
are not, wanting to be educated in special schools (Kheir et al., 2012:
3). The tool used to investigate the quality of life was the Standard
Recall Short Form Health Survey 36 (SF-36 v2), again a standardized
questionnaire, made from the medical perspective of the quality of
life, which follows eight dimensions: physiological, social, limiting ac-
tivity as a result of health problems, limiting activity due to emotional
problems, mental health, vitality, pain in the body, general health
(Kheir et al., 2012: 3).
The quality of life of families of children with autism in India was
investigated on a sample of 180 people (60 parents of children with
ASD, 60 parents of healthy children and 60 parents of children with
physical disabilities) (Perumal et al., 2014: 792). The research was
therefore quantitative, the instrument used being WHOQOL-BREF.
Statistical data showed a significantly lower quality of life for parents
of children with ASD. Significant differences and lower values were
observed for parents of children with autism regarding their health,
negatively impacted by daily trips to therapies, long waiting periods,
disturbed life rhythm, high stress level (Perumal et al., 2014v 794-795).
The same situation was also observed regarding the social relations of
the parents of children with autism, having to face the multiple chal-
lenges, from the ones of an emotional nature (deprivation, in many
cases, of the children gestures of affection, due to their incapacity for
expressing emotions), rejection by others (in India for the elders au-
tism is a shame and a taboo subject), stigma, lack of support from
the partner. From the point of view of the financial resources and of
the feeling of security, again, the values registered by the parents of

children with autism were statistically significantly reduced (Perumal
et al., 2014: 795).
Some studies aim to correlate the quality of life of parents of chil-
dren with autism with other factors, such as stress (McStay et al.,
2013; McStay, Trembath & Dissanayake, 2014). This is the case of a
study conducted on a sample of 196 parents from Australia, having
children diagnosed with ASD aged 3-16 years (McStay, Trembath &
Dissanayake, 2014). The level of stress recorded by them was statisti-
cally higher than for other categories of parents. It is noted that there
are mechanisms of adaptation of parents and restructuring within the
family, to ensure resilience and to cope with the situation.
A similar research was previously conducted in the Netherlands on
a sample of 150 parents with children diagnosed with TSA, compared
with a group of 54 parents with neurotypical children (McStay et al.,
2013). The study, appreciated by the authors as the first of its kind,
followed the effects (the level of parenting stress) that the diagnosis
and implicitly the characteristics of the child have on the parents. The
research, which used the PedsQL questionnaire, and to determine the
parenting stress level the Parenting Stress Index, revealed that there
are statistically significant differences between parents of children
with ASD and neurotypical ones regarding the level of stress felt, the
values of parents of children with ASD being higher. The age, severity
of the diagnosis, the communication skills of the child did not have a
significant impact, statistically highlighted, on the stress level felt by
parents. Regarding the disruptive behaviors of children with ASD,
hyperactivity is a factor that negatively impacts the level of stress felt
by parents, as a result of which such behavior can lead to social unac-
ceptability (McStay et al., 2013: 6-7).
Hoefman et al. (2014, 1934) drew attention to the fact that most of
the research undertaken up to that time has followed the effects that
the child’s diagnosis has on parents, especially regarding their phys-
ical or mental health (stress, anxiety, depression), neglecting other
major consequences, such as those of economic nature (costs, indebt-
edness, unemployment). The research they are carrying out is likely
to explore all areas that have a potential impact on the quality of life
of parents of children with ASD, which is why the instrument used
is the Care-Related Quality of Life Instrument (CarerQol), another
standardized and validated tool, which measures seven dimensions,
two positive and five negative, of the impact that the child’s diagnosis
has on his parents.
Figure 3 (after Hoefman et al. 2014: fig. 1)
The study was conducted in the United States on a sample of 224

families (109 from New York and 115 from Arkansas). In most cases,
there were two children in the families, one of them diagnosed with
ASD, their average age being 8.4 years, 87% being boys. From the
statistical data it was found that 97% of the families actually take care
of the children; 61% of the respondents stated that they are having
problems in daily tasks, 58% stated that they are experiencing mental
problems and 52% physical problems, while 56% are facing financial
problems; 40% of parents were experiencing severe depression. De-
spite these problems, parents said they were satisfied with how they
manage to care for their child, scoring more than 7 on the scale of
happiness (Hoefman et al., 2014).
Markowitz et al. (2016) conducted their research starting from an

extremely relevant observation: quality of life is a complex, multi-
dimensional concept, with systemic and bivalent functionality – the
diagnosis, behavior, progress, health of the child affects the quality
of life of his parents, while stress, parents’ health problems, their
isolation, their social stigmatization negatively affect the child’s de-
velopment. In order to evaluate simultaneously the quality of life of
the child, parents, extended family and their external support system,
the authors developed a tool they called the Child and Family Qual-
ity of Life (CFQL), meant to ensure a better understanding of the
relationship between ASD and the quality of life. The questionnaire
comprises 32 items, using a five step Likert scale measurement and
evaluates seven areas, relevant for the child, but also for those close to
him, namely: the child, the family, the caregiver, the relationship with
the partner, the external support, adaptation and financial aspects.
The sample consisted of parents of 212 children, aged 13 months to 7
years, who participated in an evaluation at a clinic in Cleveland, USA.
The analysis of the data found a significantly lower quality of life for
children with ASD, with the lowest values recorded in the domains:
the child, the family, the caregiver, and the highest in the domains:
financial, relationship with the partner and adaptation. A very inter-
esting observation was that the families and especially the parents re-
ported a decrease in the quality of life immediately after the diagnosis
was found, probably aware of its negative impact.
An extremely interesting project took place in France, between
1997 and 2015. In order to identify the importance and the impact
that the clinical, biological and environmental factors have on the
evolution of children with pervasive developmental disorders (mainly
ASD), a cohort (EpiTED) was created and subjected to periodic eval-
uations (at 5, 8, 15 and 20 years). The whole process is presented by
the authors in the figure below.
On the occasion of the assessments made to the children at 15 and
20 years, the quality of life questionnaires were also applied to the par-
ents. For evaluation, a standardized questionnaire was used, namely
Parental – Developmental Disorder – Quality of Life (Par-DD-QoL),
a tool that follows three dimensions, namely the emotional one, the
daily affect and the overall quality of life. The questionnaire comprises
17 questions with five-step Likert scale answers; 15 questions concern
the intensity of the difficulties encountered by the parents, the 16th
the frequency, the last question referring to the parents’ global vision
on the quality of life (Rattaz et al., 2017: 2828-2830).
In the case of parents of young adults (20 years), statistical data

showed that for 38.1% of them the diagnosis of the child has a strong
impact on the quality of life, for 28.6% a moderate impact, and for
33.3% it has no an impact. 41% of parents experienced a high emo-
tional impact, 27.6% moderately, and 31.4% did not experience an
emotional impact. Overall, parents’ quality of life was influenced by
the child’s abilities, severity of symptoms and disruptive behaviors (ir-
ritability, hyperactivity, lethargy) (Rattaz et al., 2017: 2831).
Figure 4 (after Rattaz et al., 2017: 2828, fig. 1)

Autism has a negative impact on the quality of life of parents in-

cluding when the child reaches maturity, a fact revealed by the 2/3
percentage of parents who reported a high or moderate impact of the
child’s diagnosis on the quality of life (Rattaz et al., 2017: 2834). An
important finding of the study was also that by evaluating the quality
of life of the parents at a period of 5 years (at the age of the child of
15 and later 20 years), the recorded values did not change. The only
changes found were related to disruptive behaviors, with a directly
proportional influence on the quality of life, and also the main factor,
reported by parents, which affects their quality of life once the child
reaches maturity (in adolescence the quality of life of parents was im-
pacted and of factors such as the child’s level of development in terms
of communication or personal autonomy). It could also be observed
that the parents who received support from the support groups regis-
tered an increase in the quality of life (Rattaz et al., 2017: 2834-2835).
3. Researches on the quality of life of mothers with children

with ASD
Researches undertaken to investigate the quality of life of mothers
of children diagnosed with autism spectrum disorder have shown that
in their case the level of stress and anxiety recorded is higher, while
the level of satisfaction and social support have lower values than for
the families of neurotypical children (Boyd, 2002).
The research carried out in Qatar mentioned above has shown that
there are significant differences between men and women (with lower
values in the case of women) regarding the values recorded in the in-
dicators: fatigue, physical pain, low vitality, performance at the place
of work, leisure, emotional problems. Overall, however, there are no
statistically significant differences between the values recorded by
women and men in the field of physical health (Kheir et al., 2012, 4).
Another study estimates that the lower values recorded by moth-
ers of children with ASD, relative to fathers or mothers of neurotyp-
ical children, could have multiple explanations, from the time and
resources they use in caring for the child with ASD and managing his
disruptive behaviors, to the feeling of stigmatization that often stems
from the social perception of the child, the lack of social or family sup-
port, the financial impact of the child’s diagnosis, sometimes the be-
havioral problems of the neurotypical siblings of the child with ASD
(Fairthorne et al., 2014: 666-667). The research was conducted in the
suburbs of Perth (Australia), on a sample of 16 mothers with children

with ASD and intellectual disabilities aged 11-24 years. Unlike most
researches conducted to date, this was a qualitative research, which
used a semi-structured interview (Fairthorne et al., 2014: 668). The
responses of the mothers highlighted a poor quality of life, diagnosing
the child having multiple negative consequences: job loss, divorce,
deteriorating health, exclusion from the circles of friends (Fairthorne
et al., 2014: 682).
Another qualitative research looked at the life situation of the
mothers of children with autism in Norway. The semi-structured in-
terview was used, applied to 6 mothers of children with ASD (3 boys
and 3 girls) (Øien & Eisemann, 2016: 329). The study found that chil-
dren’s problems in communication, behavior and attention are the
main factors that negatively affect the quality of life of mothers (Øien
& Eisemann, 2016: 330).
One of the negative consequences that the diagnosis of a child with
autism can have on parents, implicitly on the mother, is depression,
which is the subject of a research carried out on a sample of 1110
people, of whom 540 suffer from depression (Zablotsky et al., 2013).
The research used the Parental Depression History Questionnaire
(PDHQ), which tracked the impact that the child’s diagnosis has on
the mother from the following perspectives: relationship with the part-
ner, extended family relationships, social network, career, education
and financial situation (Zablotsky et al., 2013: 1948). The results of
the study highlighted the fact that mothers suffering from depression,
unlike the others, have low values regarding the relationship with the
partner and with the family, the financial situation and the career. The
more severe the child’s symptoms, with severe disruptive behaviors
present, the lower the values recorded by mothers (Zablotsky et al.,
2013: 1950).
Salehi et al. (2017) analyzed the quality of life of mothers with chil-
dren with ASD in Tehran (Iran), assuming that in terms of quality
of life they have the lowest values, compared to mothers of children
diagnosed with other disorders. The instrument used was the same
SF36 mentioned above. The study was conducted on a sample of 35
mothers, with children aged 3 to 7 years. Statistical analyzes revealed
that there is a significant correlation between the severity of the di-
agnosis and the child’s abilities and the quality of life of the mother
(Salehi et al., 2017: 167).
Conclusions
The quality of life of children diagnosed with ASD and their parents,
as a consequence of the child’s diagnosis, is a topic in the concerns of
researchers worldwide. Conducted not only for academic reasons, but
with the stated purpose of supporting the development of the quality of
services and social policies for this category of population, studies have
shown, by comparison with control groups formed either from neu-
rotypical subjects or from persons with other categories of disabilities
or chronic conditions, the existence of significant statistical differences
and of net inferior values of quality of life indicators for people suffer-
ing from / caring for children with autism spectrum disorder.
The lowest values of quality of life are recorded in the case of moth-
ers, and they are also the ones that most frequently face health prob-
lems (especially mental ones-stress, depression, anxiety), due to the
fact that child care is often a mother’s concern.
Some studies have identified families who have come to know re-
silience, even rebuilding their lives despite the diagnosis of the child
they still have to manage, even at maturity.
Another very interesting conclusion from the studies undertaken
on young people with highly functional autism or Asperger’s syn-
drome was that their perception of quality of life differs in a positive
way from their parents’ perception, and that their problems are not
likely to affect their positive image about life.
Even though the vast majority of the studies we have reviewed have
looked at the impact of autism on quality of life, especially from a
socio-medical perspective (physical, mental-emotional health, rela-
tionships with partner, extended family or friends network), the con-
clusions reached after analyzing the results were almost unanimous:
the autism of the child negatively impacts all aspects of the parents’
lives, the higher or lower quality of life being influenced mainly by the
severity of the disorder and especially by the presence and intensity of
the disruptive behaviors of children.
Limits and future directions of research
A first limitation of this approach is that the synthesis is not an ex-

haustive one, for reasons already mentioned at the beginning, namely
the extremely large number of studies undertaken to date, worldwide,
to analyze the balance of autism on the quality of life.
A second limit, which represents at the same time a possible di-

rection of research, is the fact that we have not documented the in-
stitutionalized resources (institutions, benefits, services in support of
children with ASD and their parents) existing in the countries where
there were carried out the researches, the perception and self-percep-
tion on the quality of life being considerably influenced by the health,
education and social protection system that this category of popula-
tion benefits from. Therefore, the quality of life research should not
be analyzed strictly from the perspective of the impact of the diagno-
sis on the family, but also in correlation with the measures, services
and benefits provided by the community, the state or the civil society
to the child and his family.
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Third part
Studies on Autism
Spectrum Disorder
from National Contexts
Students with Autism Spectrum
Disorder in Mainstream Classrooms
in Italy.
Tackling the Challenge
Tamara Zappaterra 1
Introduction
This chapter reflects on the principles, pedagogical theories and

good practices that accompany the combination autism/schooling.
Do all children with autism spectrum disorder go to school? What
kind of school? Special school or ordinary school? These questions
would be answered differently in different countries around the
world. Concerning one of the most complex disorders to be diag-
nosed and addressed, the inclusion of affected students in school is
not at all simple. This is partly because the actual application of the
law concerning the education of young people with disabilities varies
from country to country; thus their resulting education systems can
be quite different from one another. Thus, it is not a straightforward
process in every country for a family to include their child with autism
in a regular school.
1. Disability and school inclusion in Italy.

Theory and principles
In Italy has a 40-year tradition of the process that leading to inclu-

sion of pupils with disabilities in regular school. In fact, a series of
social benefit in Italy dating back to the mid-1970s led to acknowl-
edgment that attendance by pupils with disabilities in ordinary educa-
tional facilities, in this case school, is of great democratic value. With
Law 517 of 1977, Italy abolished differential classes and definitively
ended what had been a period of educational segregation for students
with disabilities (Trisciuzzi, 2002). There would no longer be two dis-
1
University of Ferrara.
tinct types of school, ordinary school and special school, the first for
typically developing pupils and the second for pupils with atypical
development, but from then on there was only one inclusive school
open to all students and their differences (Trisciuzzi, 2002; Cottini &
Morganti, 2015).
Therefore, egalitarian principles guided this decision in Italy -- the
same principles that were only sanctioned internationally in 2006
with the UN “Convention on the Rights of Persons with Disabilities”,
which in Article 24 on Education, based on equality with others, in-
vites signatory states to guarantee children and young people with
disabilities an inclusive, quality education in their own communities.
Today the inclusion of children with disabilities in ordinary schools
has become an international standard and qualifies as a fundamental
aim of a civil society (Trisciuzzi, 2002; Booth & Ainscow, 2002).
In Italy this progress was also approved for purely pedagogical-di-
dactic reasons. The enactment of the aforementioned Law 517 of 1977
was preceded by a particularly fortunate period for Italian schools,
consisting of experiments showing how including a child with disabil-
ities in a regular class activated abilities that otherwise remained latent
and that he/she achieved competencies in all areas of development,
thanks to the quality and quantity of social interactions that only a
context of typically developing peers could solicit (Zappaterra, 2014).
In essence, it was observed that in highly stimulating contexts even
children with severe learning difficulties activated what Vygotsky calls
the “proximal development zone”. This era in the schools was not
well documented – which remains a great regret – however, these el-
ements were supported by pedagogical and didactic studies in the
subsequent decades.
At the same time, our concept of disability was changing its con-
tours, up to the point of assuming and recognizing, in the definition
itself, the role played by the person’s environment. According to the
so-called biopsychosocial model of disability of the World Health Or-
ganization, called the “International Classification of Functioning”, a
disability does not define the person, but is affected by the possibility
of participation and inclusion in the environment in which this person
interacts (WHO, 2001). While in the past we witnessed an inversely
proportional relationship between the severity of a deficit and the
possibility of inclusion of the person who was its bearer in their refer-
ence environment – that is to say, the greater the deficit, the lower the
possibilities – today this ratio is fueled by complex interactions that
include environmental and circumstantial variables.
Students with Autism Spectrum Disorder in Mainstream Classrooms 153
Certainly family and school are among the most significant vari-
ables in determining the possibility of the social integration of people
with disabilities in adult life. Being born into a family that has a cer-
tain awareness of the meaning and the problems of disability makes
a big difference (Galanti & Sales, 2017). Equally, the school system
in its conformation and its degree of acceptance of diversity is a very
important element.
In Italy the school system is inclusive in the sense of that it welcomes
all students, but it is also exclusive, in that there are no diversified ed-
ucational pathways that allow families to make choices. In the Italian
context, a child who manifests a disorder has to follow one and only
one way – attending regular school, and participating in the educa-
tional experiences of everyone else, naturally with an appropriate per-
sonalization of the curriculum (Zappaterra, 2010; 2014; Cottini, 2017).
2. Students with autism spectrum disorder in the classroom.

Critical aspects and good practices
There is no doubt that students with autism spectrum disorders
face specific difficulties when placed in a regular class. Indeed, several
intrinsic characteristics of this disorder work against inclusion in a
school context. Specifically they are:
– Social interaction deficit (Kaat & Lecavalier, 2013): in people with
autism the quality and quantity of social exchanges and ways of
communicating can be very different from those of their peers.
– Intellectual functioning: in most cases we are faced with a pupil who
has an intellectual deficit in addition to being on the autism spec-
trum. The difficulties are therefore more complex and articulated.
– Maladaptive behavior (Parson, Guldberg, MacLeod & Jones,
2009; Guldberg et al., 2011; Matson, 2014): the person with au-
tism has stereotyped behaviors that are not coherent with the
context (Barale & Ucelli, 2006). By the expression “maladaptive
behavior” we refer to ways of reacting to certain stimuli that are
completely inappropriate for that context, such as uncontrolled
reactions of motility (throwing themselves on the ground, hitting
the head against hard surfaces, or other body movements that
injure themselves and/or others).
Although these characteristics are known to be typical of the be-
havior of many persons with autism and as such can invalidate the
success of inclusion in a scholastic or social context, today inclusion

is still possible.
However, in order to achieve real inclusion, it is necessary to over-
come the old concept of integration, in which the pupil had to adapt
to the needs of the environment. Instead, in the current concept of
inclusion, there are environments, and therefore also schools, that are
open to all the needs of the students, taking into account the fact that
the student body is multiple and diversified. A school today should
therefore be welcoming towards everyone and every individual. Re-
garding this aspect, Lucio Cottini pointed out that the student with
autism spectrum disorder should not be considered a ‘guest’ who
comes to the classroom from time to time, while the rest of his/her
school-time is spent outside the classroom, in the corridor or in spaces
specially equipped for him (2017). This student is an effective mem-
ber of the class and as such must participate in the educational pro-
cesses of the class and feel part of it. His right to learn is no different
or less than that of his companions, so the teaching team must neces-
sarily implement an adaptation of the curriculum that allows him to
express his abilities, despite his peculiarities of behavior, interaction
and learning. But before analyzing the adaptations of the curriculum
that the literature indicates as effective, we wish to emphasize here the
most important aspect – that is, direct contact with typically develop-
ing students and with all the teachers in an ordinary class represents
for the student with autism an experience of inestimable value for the
development of his/her potential, maturation as a person, and social-
ization skills. School is the most important microcosm environment
of society, along with that of the family, for maturing into adult life
(Dillon et al., 2014; Galanti & Sales, 2017).
But let us discuss several critical aspects. The first aspect to keep
in mind is the context. For a pupil with autism spectrum disorder the
environment must necessarily be autism-friendly (McAllister & Sloan,
2017). When it comes to learning environments, nothing can ever be
left to chance, because they must be functional for the intended pur-
pose. If this is true for all pupils, it is particularly true for pupils with
autism. The learning context for a student with autism becomes inclu-
sive and effective if it has the following characteristics:
– The space is divided into specific areas for specific activities;

whether it is a corner of the classroom, or a space outside the class-
room, such as a laboratory for special activities, or other, that space
must visually suggest the activities that one needs to accomplish
(Mesibov et al., 2007; Panerai et al., 2009; Cottini & Morganti,

2015). The student with autism has predominantly visual think-
ing and may have inadequate language ability, relating to either
production or reception. Therefore, well-equipped environments
reduce intervention by the adult teacher to a minimum by encour-
aging the student to concentrate on the activity to be performed
(Parson, Guldberg, MacLeod & Jones, 2009; Fixsen et al., 2013).
– Learning is centered around Visual Teaching. This element is in
perfect harmony with the previous one. A teaching method sup-
ported by iconic language (images, graphic organizers, visual work
patterns) is highly compatible with the learning modalities of peo-
ple with autism, and this type of didactic communication method
is actually effective for all students, regardless of the presence or
not of a learning difficulty (Mesibov et al., 2007; Mitchell, 2008;
Panerai et al., 2009; Cottini & Morganti, 2015).
– The activities to be performed are predictable and understandable
(NAC, 2009; Fixsen et al., 2013). This relates especially to the ma-
terial used in the task or to the very nature of the activity. Chil-
dren with autism prefer routine activities, where they are already
familiar with the procedures. This does not mean that they must
always be the same, but that the way they are carried out is known
to them, and constitutes a shared script they can rely on. The level
of difficulty and commitment in cognitive terms will always be de-
termined by the teachers, in the context of creating a personalized
path for the student. Therefore, activities are preferred where the
possibility of error is reduced to a minimum, so that the student
can have internal reinforcement and immediate feedback on the
degree of adequacy of his abilities (Mesibov et al., 2007; Parson,
Guldberg, MacLeod & Jones, 2009).
– The activities are repeated daily or weekly (Galanti & Sales, 2017).
A balanced dose of routine activity is very useful for the student
with autism, because this will help reduce the anxiety that is a trait
that often arises when dealing with new tasks.
– The environment in which the educational activity takes place does
not present distracting stimuli (Molteni, 2015). The classroom
must contain only the tools and furnishings necessary to convey
the teaching-learning process. Any other object or ornament is
likely to distract the student or create communicative interference.
The placement of the student’s desk within the classroom should
also be chosen based on the above criteria. The literature suggests
identifying an environment within the classroom space where the
student can work individually, another in which he can work with a

small group of companions, and still another location where he can
work with the support teacher. Different spaces should be used
for diversified activities with distinct educational purposes. This is
why a fairly spacious classroom is suggested for classes that include
a student with autism.
– The setting is real and not artificial. For some activities, real learn-
ing environments should be preferred whenever possible, since in
such contexts the pupil’s motivation to learn is stronger, and also
because the student may not have sufficient ability to transfer any
learning achieved in an artificial setting.
– The teacher carefully prepares not only the learning activities, but
also the moments of transition between one activity and another,
including moving from one place to another in the school. In fact, a
student with autism always needs clear guidelines on how to beha-
ve and often this “empty” time is for him a time of crisis in which
he not only does not know what to do, but does not know what
behavior to adopt. Often at these times, which escape the direction
of the teachers, students with autism become overwhelmed with
sensory overload, an excess of visual and auditory stimuli (such as
the noise and voices of their classmates), which can create signi-
ficant difficulties in concentration, or cause them to have a melt-
down (Bogdashina, 2016).
Therefore, an appropriate adaptation of the class curriculum is

necessary, tailored to the particular needs of the student with autism
(Rose, Meyer & Hitchcock, 2005; Hall, Meyer & Rose, 2012). There
must be a didactic program for the class and ad hoc didactic program-
ming for the pupil with autism. However, they must find points of
contact, precisely as a result of Italy’s decision on inclusion for all its
students (Cottini, 2011; 2017).
In the debate on the inclusion of pupils with severe disabilities in
regular classes, there is an open question regarding one aspect: is it
more appropriate for these pupils to have their actual learning space
inside or outside the classroom? The question would seem to contra-
dict the inclusive choice. Not so, but in fact an explanation must be
given. It should be emphasized that different spaces convey and sup-
port different learning skills and educational goals. Especially when
considering a student with autism spectrum disorder with high cog-
nitive functioning, sharing classroom space and participating in the
same activities as their classmates is fundamental for learning social
rules and for feeling they are an integral part of a community (Daw-
son, 2008; Mitchell, 2008; Reichow, Steiner & Volkmar, 2013; Cot-
tini, 2017). Moreover, even in the case of a low-functioning autistic
student, although sometimes the activities he performs are different
from those of his companions, sharing the same space allows him to
feel he is part of a group.
However, a situation that has the student with autism carry out
activities outside the classroom has a certain pedagogical-didactic jus-
tification. Some activities take place in spaces designed for specific
purposes, such as dedicated laboratories, or require a one-to-one re-
lationship with the teacher or a companion, or activities that require
sound isolation and the ability to interact with a limited number of
people (Cottini, 2011). Sometimes this type of activity is preparatory
to achieving a level of ability that subsequently allows the pupil to par-
ticipate in the activities in class. Therefore, they are to be considered
temporary or used less within the curriculum.
In any case, the equation that school time spent in the classroom
is always inclusive, while time spent outside the classroom is not in-
clusive, is not valid (Cottini, 2017). Every aspect of the curriculum
of a student with autism must be considered inclusive if the activities
envisaged are identified as those most effective for his learning.
In addition, experts generally agree that the situation of a student
with autism working exclusively with the support teacher is not ped-
agogically sustainable. If the choice to include students with disabili-
ties in regular classes was based on pedagogical-didactic motivations
and on the recognition of a right, it was also amply supported by the
acknowledgment that a good part of the achievement of objectives
is due to the stimulation of the context of their peers and therefore
to socialization (Parson, Guldberg, MacLeod & Jones, 2009; Vivanti
et al., 2014).
Sufficiently flexible forms of the curriculum must therefore be de-
signed for each class, so as to be able to make any necessary adjust-
ments for each type of student. Right from the planning stage, edu-
cational programming must be developed with content and learning
objectives that can be developed in different ways and with differenti-
ated communication codes – linguistic, visual, iconic – depending on
the forms of preferred sensory input and cognitive abilities of every
student (Olley & Reeve, 2004).
In cases of pupils with low-intellectual-functioning autism it will
not always be possible to maintain for the individual those learning
objectives designed for the class. However, it is desirable to maintain
points of contact between the curricular programming of the class

and that of the student, precisely because of the potential inherent
in socialization among peers and in sharing and participating in the
same training processes. If it is not possible to have the same learning
objectives, one can at least make all the students work on the same
content. It is possible to personalize the objectives and differentiate
the activities, keeping the work of the student with autism in the
same context as the content of his companions. This solution was
defined by Cottini as participation in the “culture” of a task (2011;
2017). That is to say, if a pupil is unable to participate in the reali-
zation of a task, he will still be able to participate in the “culture”
of that task with personalized activities, which will make him feel
included in the context of the class group. These points of contact
must be sought and planned for by the teachers, who must employ all
their imagination and inventiveness.
In this regard, involvement in peer activity is very effective for
the learning of pupils with autism as well as for raising their self-es-
teem (Reichow, Steiner & Volkmar, 2013; Matson, 2014; Zappaterra,
2014). Classmates prove to be a real resource to be used appropriately
in the curriculum (Matson et al., 2012; Cottini & Morganti, 2015).
The most effective educational interventions for students with autism
spectrum disorder include Cooperative Learning (Booth & Ainscow,
2002; Hall, Meyer & Rose, 2012). In these cases, this teaching meth-
odology presents positive aspects in relation to the following aspects:
– Promotes social interaction between pupils, helping to decrease
maladaptive behavior of the pupil with autism.
– Promotes improvement of the student’s skills, especially regarding
the development of communication skills and learning social rules,
since in this way the student has the opportunity to closely observe
the behavior of typically developing classmates, who can serve as a
model.
– Promotes mutual understanding between peers and the develop-
ment of welcoming attitudes on the part of all pupils, concerning
the particular communication skills of the student with autism.
– Promotes the self-esteem and sense of self-efficacy of the student
with autism who is called upon to make a personal contribution
that is fundamental for the realization of the task entrusted to the
whole group.
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1, 47-63.
Comparison of knowledge
about autism spectrum disorders
between students in Romania, Italy
and Croatia
Jasmina Stošić 1, Ana Wagner Jakab1, Matea Begić1
Introduction
Research shows that there are many misconceptions about autism

spectrum disorders among public but also professionals and students.
There are different factors that contribute to those myths, misconcep-
tions and stigma related to ASD.
Supporting persons with ASD requires teamwork using a collab-
orative approach. That means that team members are professionals
within different areas of specialities. To ensure a positive outcome
for persons with ASD and their families, each member needs to have
training and knowledge to contribute to the team.
Incomplete knowledge about ASD was noted among college stu-
dents in Great Britain (Shah, 2001), Nigeria (Igwe et al., 2010), US
(Tipton & Blacher, 2014; Obeid et al., 2015) and Lebanon (Obeid et
al., 2015).
Commonly reported misconceptions are related to aetiology
(Alqahtani, 2012; Obeid et al., 2015), underestimating the prevalence
of ASD (Dillenburger et al., 2013; Obeid et al., 2015), lack of knowl-
edge about core diagnostic traits (Bakare et al., 2009; Kharti et al.,
2011; Obeid et al., 2015) and support services (Chown, 2010; Imran
et al., 2011).
Level of knowledge among students and professionals depends on
different educational background, cultural context and experience
with ASD.
Shah (2001) has evaluated a level of awareness about ASD among
UK medical students at different stages of their training. Results show
that fourth years students respond significantly more correct to ques-
tions related to diagnostic criteria and core symptoms. In accordance
1
University of Zagreb.
to those findings Shah suggested that training of medical students

needs to be more focused on autism. That will improve diagnostic
process as well as access to intervention. Level of physicians’ knowl-
edge about ASD has a great influence on his or her recognition of
symptoms and the time/age in which diagnosis is set (Rhoades, Scarpa
& Salley, 2007).
Schwartz and Drager (2008) stated that most of the school speech
and language pathologists in thirty three states of USA had correct
knowledge about the clinical presentations of ASD in children but
mixed perceptions of diagnostic criteria despite the fact that most of
them got information on ASD at some level of their educational train-
ing. Some of them stated that they would like to have additional train-
ing abut autism because they feel lack of confidence in direct work
with children with ASD.
Igwe et al. (2010) conducted a study on 300 final year undergradu-
ate students from department of Medicine, Nursing Science and Psy-
chology, University of Nigeria, Enugu State with aim to investigate
the level of knowledge and awareness about autism in childhood. The
total score on questionnaire was positively correlated with number
of weeks of posting in psychiatry and paediatrics. That means that
medical and nursing students who spent more time in psychiatric and
paediatric facilities then psychology students had better recognition
of signs and symptoms of autism in childhood. Furthermore, total
score was also positively correlated with the number of credit hours of
lectures in psychiatry/abnormal psychology and paediatrics. In con-
clusion, the more credit hours of lecture and hours of exposure to
the clinical experience the greater the student knowledge about ASD.
In this study medical students had the highest mean score; they were
followed by nursing students and psychology students who had the
lowest score.
Tipton and Balcher (2014) conducted anonymous online survey
of autism knowledge on undergraduate, graduate students, faculty
and staff, in other words, of entire community of major South West-
ern US university. They collected 1.057 surveys and 76% of partic-
ipants had more correct answers then neutral or incorrect. Those
respondents that had significantly more correct answers then others
claimed to have someone with ASD in family. That finding argues in
favour of the fact that immediate experience with persons with ASD
increases knowledge about autism. Education and training on ASD
for professionals should include practical and clinical work with peo-
ple with ASD.
Comparison of knowledge about autism spectrum disorders 165
Through increasing knowledge about ASD it is possible to de-

crease misconceptions and stigma about ASD.
Cultural context and media also contribute to the existence of
misconceptions and stereotypical perceptions of ASD. In countries
in which ASD receives more public attention as well as research com-
munity attention it is probably easier to access correct information
through education and experience. Countries that have political and
economic stability can develop enough support services for people
with ASD and promote their inclusion in society. No visible markers
of ASD can contribute to public misconceptions about ASD because
unknowledgeable people may perceive person with ASD to act pur-
posely in the way that is not in accordance with social norms (Gray,
2002; Obeid et al., 2015). In countries that provide secure conditions
for inclusion of people with ASD, there are greater opportunities for
people with ASD and neurotypical people to meet each other, form
friendships with each other and bridge their differences.
Obeid et al. (2015) conducted a study that compares knowledge
and stigma associated with ASD among college students in Lebanon
(N=329) and USA (N=346). Lebanon is a country with limited au-
tism resources and on the other hand, US has considerable autism
resources. Students completed assessments of knowledge and stigma
before and after online ASD training. Lebanon students reported less
overall knowledge and higher stigma towards ASD. Despite that fact
Lebanon students were more knowledgeable about some specific as-
pects of ASD such as disparities in access to care then USA students.
Online training about ASD correlates with increasing knowledge and
decreasing stigma towards ASD in both groups of students. Authors
conclude that online training may be cost-effective way to reduced
misconceptions towards ASD. It could be a good way for both type of
countries, those with limited support services for persons with ASD
as well as for countries where considerable support exists but is un-
equally distributed (Obeid et al., 2015).
The main output of Erasmus + project Innovative Academic
Course on Integrative Interventions for Children with Autism Spec-
trum Disorders within which this study was undertaking was to de-
velop an academic course on ASD. The project is implemented by
West University of Timisoara, Romain in partnership with University
Lucian Blaga University of Sibiu, Romain, University of Florence,
Italy and Faculty of Education and Rehabilitation Sciences, University
of Zagreb, Croatia. These countries have some cultural differences,
but also similarities.
Romania is a country located at the south-east of Central Europe.

It is 12th largest country in the European Union. It has population
of over 19 million inhabitants (National Institute of Statistics, 2019).
Romania became a full member of European union in 2007 (Europa
EU). 83,4% (World population review, 2019) of the country’s people
are ethnically Romanian and almost 82% (Index mundi, 2018) of the
population are adherents of the Eastern Orthodox Church. Accord-
ing to Eurostat (2019) there are 35.7% of population at risk of pov-
erty or social exclusion in Romania which makes it one of the highest
risks in European Union.
Italy is a country situated in southern Europe. It has population of
over 60 million (National Institute of Statistics, 2018). The dominant
religion in Italy is Roman Catholicism and there is 80% of people
who identify as Christians (World population review, 2019). Italy
became member of European Union in 1958 (Europa EU). Accord-
ing to National Institute of Statistics (2018) in Italy over 1.8 million
(7%) households lives in absolute poverty. Incidence of poverty by
geographical area indicates that South Italy and Islands are the most
affected (National Institute of Statistics, 2018).
Croatia is a young south-eastern European country with a popula-
tion of just over 4 million. It was recognized as independent in 1992
and became a part of European Union in 2013. With over one million
people (26.4% of the population) living in or at the edge of poverty
(Eurostat, 2019), Croatia is one of the poorest countries in European
Union. With over 90% of the population being ethnic Croats, the na-
tion is highly homogenous (Croatian Bureau of Statistics, 2012). 85%
of the population are roman Catholic (Croatian Bureau of Statistics,
2012).
The system of support for children with ASD and their families is
still underdeveloped in those countries with the lack of professionals
and ASD specific services.
The aim of this study was to detect knowledge of students and
needs for improvements of their education. Students from different
study programs participated in the project and this study. All those
study programs are supposed to prepare students to become profes-
sionals that will work, besides others, with children and people with
ASD.
1. Description of Study Programs

1.1. West University of Timisoara, Romain
Students that were participants of the project attended this study
programs: Pedagogy (PEDA), Special Psychopedagogy (PPS) and
Pedagogy of Primary and Pre-school Education (PIPP).
The Pedagogy specialization in the field of Educational Sciences,
one of five such specializations existing at national level, is offered as
a study program both at the level of initial training and level II of the
master’s cycle, by deepening in the fields of pedagogy: educational
management, curriculum, educational counseling.
The mission of the PEDAGOGY specialization offered by the
Department of Educational Sciences at the Faculty of Sociology and
Psychology of the West University of Timisoara is to train pedagogical
specialists able to offer qualified assistance for the design and devel-
opment of any teaching and formative act, regardless of age, institu-
tion educational or educational context, formal or non-formal.
Possible occupations of future graduates: professor of psycho-ped-
agogical disciplines at pre-university and university level, professor of
social sciences, educational counselor for school and career guidance,
education and training specialist, educational programmer and edu-
cator, trainer in adult education, social pedagogue, training specialist
in human resource development department, etc.
The Specialized psychopedagogy (PPS) specialization mission of-
fered by the Department of Educational Sciences at the Faculty of So-
ciology and Psychology of the West University of Timisoara is to train
specialists in Education Sciences with the Special Psychopedagogy.
The Special Psychopedagogy specialization develops the following
sets of professional competencies: designing and carrying out edu-
cational and training activities for children with special educational
needs, psycho-pedagogical evaluation and special psychodiagnostics
of people with special needs, designing psycho-pedagogical interven-
tion and specific therapies, designing, psycho-pedagogical integration,
integration of children with special educational needs in inclusive and
inclusive schools and psycho-pedagogical counseling of children with
special educational needs, their family and teachers involved in their
education.
Possible professions after finishing this study program are: teach-
er-educator in special education; Special Education Teacher, speech
therapist, support teacher; traveling instructor; psihodiagnostician;
teacher of early education; pedagogue; professor of perceptual educa-
tion-visual; school counselor; teacher for empowering children with

school failure; professor of nongovernmental educational programs;
a researcher in the field.
The mission of the Pedagogue of primary and practical education
(PIPP) provided by the Department of Educational Sciences at the
Faculty of Sociology and Psychology of the West University of Ti-
misoara is to train specialists in education sciences with the qualifica-
tion of primary and pre-school Education Pedagogy, capable of con-
ceiving and to carry out specific didactic activities in an educational,
formal or non-formal context. The PIPP specialization program has
a pronounced interdisciplinary character, capitalizing on the knowl-
edge of multiple fields such as: Romanian language and literature,
didactics of language and communication, teaching of Romanian lan-
guage and literature in primary education, mathematics, history, ge-
ography, didactics of these disciplines, pedagogy, psychology, special
psycho-pedagogy, social pedagogy, sociology, through a multi-, inter-
and transdisciplinary approach to education issues.
Within study programs on University of Timisoara there are no
separate courses for autism spectrum disorders. Knowledge and com-
petencies of students about ASD come from 2 courses: Multiple dis-
abilities and Developmental disorders (West University of Timisoara,
https://www.uvt.ro/en/).
1.2. Lucian Blaga University of Sibiu

Participants of this project attended Teacher Training Department
within Faculty of Socio-Human Sciences in Lucian Blaga University of
Sibiu. Degree programs are carried out in 2 main programs: Pedagogy
of Primary and Preschool Education (in Romanian) and Pedagogy of
Primary and Preschool Education (in German). Mission of this de-
partment is psycho-pedagogical and methodical preparation for stu-
dents of all specializations and continuous training for teachers from
the pre-university education. That means that, at present, any teacher
in secondary, high school, post-secondary and higher education, in
order to be able to practice, must take Level 1 and Level 2 courses.
First level of the psycho-pedagogy module teaches students main con-
cepts of their future profession: pedagogy, educational psychology,
special didactics, classroom management and practical experience.
Second level requires from students to demonstrate teaching skills,
to prove their research skills in this field, to study adolescent, young
and adult psycho-pedagogy, curricular area didactics, education proj-
ect design and management and many other topics which can extend
the educational and social skills necessary for the successful practice
of the teaching profession. Within these programs, topics concerning
ASD are covered through course of Special Psychopedagogy (Lucian
Blaga University of Sibiu, http://socioumane.ulbsibiu.ro/dep.ppd/).
1.3. University of Florence, Italy

Participants of the project attended School Leadership and clinical
pedagogy study program and Education Sciences.
The Master’s Degree course, School leadership and clinical ped-
agogy, with its two profiles, aims to respond to the different types
of personal services and aims to train professionals able to combine
knowledge related to the organizational-managerial sphere with ped-
agogical, psychological and sociological knowledge. Professionals
capable of interpreting the peculiarities of educational, re-educa-
tional and re-enabling systems aimed at the person, preventing their
approval to economic-corporate one’s tout court. Graduates in the
master’s degree program in School Leadership and Clinical Pedagogy
can be defined as an educational leader, a training manager, an expert
in the problems of discomfort and disability.
The degree course in Primary Education, divided into a single
educational path without the division into addresses, promotes an
advanced level of theoretical-practical training in the field of psy-
cho-pedagogic, methodological-didactic, technological and research
disciplines, aspects that characterize the professional profile of a nurs-
ery and primary school teacher. The CdS in fact enables teaching in
the Nursery School and in the Primary School.
The Degree Course in Education Sciences allows you to acquire
the knowledge and skills necessary to work in the field of formal ed-
ucation and non-formal education in the plurality of contexts that
require specific preparation pedagogic. The CdS offers the neces-
sary skills to carry out programming, implementation, management,
evaluation of educational and training actions in public and private
services and education and training systems from childhood to adult-
hood. The CdS intends to train a professional figure of Educator for
childhood, adolescence and adulthood who responds to the increas-
ingly complex demands of the world of work in the field of Services
to the person throughout the entire life cycle: from early childhood,
to special needs, to discomfort and marginality especially during the
adolescent period, to the new forms of social deviance, to the different
forms of discomfort, to the problems of the third/fourth age, but also

to the new needs of education in adulthood.
Educator for early childhood: educators who intend to become in-
volved in early childhood education services both in the nests system
and in the diversified and rich framework of types of supplementary
educational services for early childhood; they are educators who de-
sign and implement educational activities aimed at promoting psy-
chic, cognitive and social development in preschool children.
Educator for adulthood and old age: educators who intend to work
in the field of non-formal education of adults and the elderly with sup-
port functions in the planning and management of educational and
training activities in dedicated training centers, in cooperatives social,
in companies and organizations, in territorial educational services such
as day centers, penitentiary institutes, reception centers for immigrants.
Educator for the inclusion of disability and youth distress: educa-
tors for services aimed at disability – from early childhood to adult-
hood, both in the school and outside the school environment – and
services for social inclusion, for the prevention of discomfort – in par-
ticular to youth unease, marginality, deviance, gender, cultural and
religious discrimination.
Within those study programs there are three courses in which
topics about ASD are covered: Special education, Clinical pedagogy
and Disability and rehabilitation psychology (University of Florence,
https://www.unifi.it/changelang-eng.html).
1.4. Faculty of Education and Rehabilitation Sciences (ERF),

University of Zagreb, Croatia
Students in the project attended the undergraduate study Rehabil-
itation which continues with study program Inclusive Education and
Rehabilitation.
The programme of study is based on the basic knowledge in the in-
terdisciplinary field of Educational Rehabilitation Sciences which im-
plies all those processes and functions linked with visual impairments,
learning difficulties, attention deficit/hyperactivity disorder (ADHD),
intellectual disorders, disorders of the autistic spectrum, multiple dif-
ficulties, motoric disorders, chronic diseases (developmental motoric
disorders, traumatism, autoimmune and malignant diseases, etc.), cre-
ative and art/expressive therapies.
Upon the completion of this study, the student acquires compe-
tences which make them eligible for employment on the tasks of me-
dium complexity, i.e. under supervision of a holder of the MA degree,

in accordance with the Act on Education and Rehabilitation Activities
(National Gazette, no. 124, 2011).
Within the framework of the study programme of Rehabilitation,
the holders of the BA degree acquire insight into the complementary
concepts of the development of education and rehabilitation sciences
and develop their professional identity in the following fields: visual
impairments, motoric disorders, chronic diseases, and art therapy, as
well as in inclusive education and rehabilitation.
Students acquire basis knowledge of diagnostic, educational, and
therapeutic procedures, teamwork, professional ethics, and interdis-
ciplinary communication.
Students come to understand the characteristics of the develop-
ment and functioning in different environments, of both children and
adults with intellectual disability, learning difficulties, attention def-
icit/ hyperactivity disorder (ADHD), autism spectrum disorder and
multiple disabilities. They are qualified to conduct the assessment,
create, implement and evaluate a support plan with the aim of im-
proving the general functioning, and the functioning within various
developmental areas of persons with disabilities.
There are 2 ASD courses in undergraduate and 2 courses on gradu-
ate study. Courses cover the theory and characteristics of ASD, teach-
ing and intervention methods in lecture format and practical experi-
ences with children and adults with ASD.
From previous section, it is clear that all study programs from four
different universities and three countries prepare students for pro-
fessions that will include providing support for persons with ASD.
As mentioned, it is well established that professionals working with
persons with ASD should have some specific knowledge and compe-
tencies. The aim of this study was to compare the knowledge about
ASD and awareness of different approaches between students from
different universities (Faculty of Education and Rehabilitation Sci-
ences, http://www.erf.unizg.hr/hr/).
2. Method
2.1. Participants
As mentioned in previous section, participants of this study were
Romanian students from Lucian Blaga University of Sibiu and West
University of Timisoara, Italian students for University of Florence
and Croatian students from University of Zagreb. The sample is con-

venient. They were receiving training on ASD within the European
Union ERASMUS + project Innovative Academic Course on Inte-
grative Interventions for Children with Autism Spectrum Disorders.
There were in total 155 participants, mean age 22 years, 83% were
female participants and 84% of participants attended undergradu-
ate study. Information about participants from each University are
presented in Table 1. Participants were students from various study
programs that make them competent to work with typical children
and children with disabilities in various settings (see introduction for
more information on programs).
Table 1. Gender age and study level of participants
University N Age Female Male Prefers Under Graduate Post

(M) not to graduate study graduate
say study study
Lucian Blaga 40 20 39 1 / 39 1 /
University
of Sibiu
West 37 23 36 1 / 32 5 /
University
of Timisoara
University 40 25 37 / 3 21 16 3
of Florence
University 38 20 37 1 / 38 / /
of Zagreb
All 155 22 149 3 3 130 22 3
participants
2.2. Data collection

A Student questionnaire – Knowledge and attitudes regarding
ASD was used. The questionnaire was adopted from teacher’s ques-
tionnaire (Preece et al. 2018) used in another European project
(ASD - EAST ERASMUS + project). The questionnaire had 3 sec-
tions. First section included questions about socio – demographic
data and study programs (gender, age, name of the study, study
level, courses on ASD, content of curses on ASD). Second section
included statements about ASD and students had to express their
agreement or disagreement with them. Statements included facts
and myths about autism and for every correct answer participant has
received 1 point. All points were then summed for each participant.
Third part included the list of specific approaches and students had
to express how much they know about different methods (ABA, TE-
ACCH, PECS etc.). Four-degree Likert scale was used ranging from
no knowledge to I have a lot of knowledge. Questionnaires were
delivered to students before the teaching activities of the IACIIC-
ASD project started.
3. Results
3.1. Knowledge about ASD
One Way ANOVA was used to test the differences in knowledge
regarding ASD. Results are shown in tables 2 and 3. There was a
statistically significant difference in knowledge regarding ASD be-
tween students from different universities. Students from Croatia
have achieved the highest mean score, followed by Italian, then stu-
dents form Timisoara and students from Sibiu. That can maybe be
explained by the fact that only students from University from Zagreb
had at least one course specific to ASD and 50% of them had some
practical experience with persons with ASD within those courses. So,
this is in accordance with study by Igwe at al. (2010) in which persons
with more clinical experience and credits had more knowledge. When
we analyse results on statements (see table 4) we can see a lot of dif-
ferences in agreement on specific statements between students form
different universities.
Table 2. Descriptive statistics on points acquired on Knowledge

about ASD variable
University N Mean SD Std. Error

Lucian Blaga 43 8,7907 2,47423 ,37732
University
of Sibiu
West University 36 11,2222 2,82955 ,47159
of Timisoara
University 40 12,6250 1,97013 ,31150
of Florence
University 38 15,2895 1,90175 ,30850
of Zagreb
Total 157 11,8981 3,31311 ,26442
Table 3. One-way ANOVA results - differences between students on

Knowledge about autism variable
Sum of Squares df Mean Square F Sig.

Between Groups 889,840 3 296,613 55,174 ,000
Within Groups 822,529 153 5,376
Total 1712,369 156
While the majority of students from all universities agree that chil-
dren with ASD can benefit from early intervention, that ASD is not
the result of bad parenting, that children with ASD can be helped
to have a better life and that they need special approaches, there are
some statements in which there is a big discrepancy between students.
While 95% of Croatian and 80% of Italian students agree that chil-
dren with ASD can be educated alongside their typical peers, almost
half of students from Sibiu don’t agree with that. 74% of Sibiu stu-
dents also agree that all students with ASD should be educated in
special school while only 5% of students from Croatia and 7% of
students from Italy agree with that. Since students from Sibiu will be
preschool and primary teachers and work in mainstream conditions
this is a worrying result. On the other hand, it is not a surprising result
since during their education they only have one course on children
with disabilities and few topics on ASD within that course.
Table 4. Some statements from Knowledge about autism variable
Statements University University Lucian Blaga West

of Zagreb of Florence University University
of Sibiu of Timisoara
Children with ASD benefit 100% 90% 88% 86%
from early intervention
ASD is the result of the bad 0% 3% 5% 3%
parenting
ASD can be cured 3% 15% 70% 45%
ASD cannot be cured but 100% 98% 79% 78%
children can be helped to have
a better life
Children with ASD are incapa- 3% 15% 54% 15%
ble of being educated alongside
their mainstream peers
All children with ASD need 82% 95% 97% 97%
specialist education approaches
All children with ASD need to 5% 7% 74% 28%
be educated in special schools
Statements University University Lucian Blaga West

of Zagreb of Florence University University
of Sibiu of Timisoara
Children with ASD can be 95% 80% 51% 73%
educated alongside their main-
stream peers
Children can grow out of ASD 13% 60% 26% 44%
When children with ASD 3% 7% 44% 8%

finally develop speech, all other
difficulties disappear
Individuals with ASD can’t live 32% 15% 61% 37%
independently
Persons with ASD can have 92% 87% 35% 28%
master or doctoral degree
All children with ASD have 19% 78% 90% 83%
special gifts and talents in
specific areas
Persons with ASD don’t expe- 18% 25% 48% 34%
rience or show emotions
There is also a lack of knowledge about characteristic or hetero-

geneity in expression of ASD. 48% of students from Sibiu and the
third of students from Timisoara agree that persons with ASD don’t
experience or show emotions, and 44% of students form Sibiu agree
that when speech develops, there are no other challenges that persons
with ASD have. Furthermore, 72% of students from Timisoara and
65% of students from Sibiu think that persons with ASD can’t have
master or doctoral degree and 61% of Sibiu students think that they
can’t live independently. It can also be explained by the lack of spe-
cific courses on ASD but also with the fact that children with ASD in
Romania are mainly educated within the special system.
There are also differences on the statement that ASD can be cured,
70% of students form Sibiu and 45% of students from Timisoara
think that ASD can be cured. Additionally, 60% of students from Italy
and 44% of students from Timisoara believe that children can grow
out of ASD. The first statement can imply that ASD is a disease, not a
condition or a form of neurodiversity and second can imply that some
children when they are growing up just stop having ASD. Recovery
from autism is a very debatable subject. So far, the term “recovery”
was used by researchers that evaluated intervention outcomes. It was
used only as a result of a very intensive intervention. There is some
evidence that some children do not present symptoms of ASD after
that kind of intervention (eq. Fein et al., 2013; Seltzer et al., 2004).
However, some studies have shown that those children still have a
need for medical, therapeutic and educational support (eq. Mundy,
1993; Olsson, Westerlund, Lundstrom & Giacobini, 2015; Shulman
et al., 2019) and that when years pass after the treatment some of them
met criteria for ASD diagnosis again (Olsson et al. 2015). It is very im-
portant to be cautious in using the term recovery, cure or growing up
from autism, especially in working with families. That can give false
hopes to parents who can then only focus on recovery and in that situ-
ation, every other outcome would be a great disappointment for them.
3.2. Knowledge about specific approaches

In table 2 the percentage of students that have selected I have
some knowledge and I have a lot of knowledge about the approach
are presented. As expected, the results also vary between students
from different universities. The highest percentage of students has a
perception that they have knowledge about alternative and augmen-
tative communication (AAC) system (Croatian and Italian students),
followed by sensory based interventions (Croatian students), applied
behaviour analysis (Croatian, Italian and Timisoara students), and
expressive-art approaches (Croatian and Italian students). Students
of Sibiu have the lowest results, with the highest result for sensory
based approach (33%). This is understandable again because they
don’t have courses on ASD. Timisoara students have the highest re-
sult for ABA (78%), followed by expressive – art approaches (50%)
and child – oriented approaches. Students from Italy have the highest
results for AAC systems followed by ABA (72%), TEACCH (68%),
expressive – art approaches (68%). Students from Croatia have the
highest results for AAC systems (87%), followed by sensory – based
approaches (83%), expressive – art approaches (79%), ABA (63%)
and TEACCH (58%). Even though there is a lack of knowledge about
ASD present among students, there are some high results on differ-
ent approaches. This can be explained by the fact that some of those
approaches (for example sensory based, expressive – art approaches,
AAC and ABA) are not used exclusively for children with ASD. Stu-
dents from Italy, Croatia and Timisoara have other courses that cover
content about children with other disabilities for which those inter-
ventions can also be implemented. So, even though they are familiar
with the approach it may be that they don’t know how to use it with
children with ASD. Croatian students that were participants of this
study had only one introductory course before, and they will have 3
more courses on specific ASD strategies and interventions until they
graduate.
Table 5. Percentage of students that have some or a lot of knowledge
about specific approaches
Approaches University University Lucian Blaga West

of Zagreb, of Florence University of University
Croatia Sibiu of Timisoara
Sensory-based approaches 83% 30% 33% 41%
ABA - Applied Behaviour 63% 72% 23% 78%
Analysis
Cognitive visual approaches 58% 68% 16% 36%
TEACCH
Social stories 47% 30% 14% 33%
Alternative and augmentative 87% 83% 28% 25%
communication systems; sign,
PECS
Special diets 37% 10% 9% 25%
Drug/medication interventions 29% 8% 9% 29%
Child oriented approaches; 42% 20% 12% 47%
DIR Floor time, Son Rise,
Denver model
Expressive (art) approaches 79% 68% 26% 50%
Social skills groups 45% 33% 23% 29%
Peer support/peer mediated 47% 53% 9% 39%
learning
Conclusion
Students that graduate on programs that will enable them to get em-
ployment in mainstream or special settings that provide educational or
therapeutic approach for persons with ASD should have specific train-
ing and education on autism spectrum disorders. The result of this
study has shown that there is a lack of knowledge on autism spectrum
disorders among future professionals and that there are still some prej-
udices present. Professionals from West University of Timisoara and
Lucan Blaga University of Sibiu have recognized the lack of courses
on ASD within their study and formed a partnership with ERF, Uni-
versity of Zagreb and University of Florence to create curriculum and
materials for such a course within the ERASMUS + international proj-
ect Innovative Academic Course on Integrative Interventions for Chil-
dren with Autism Spectrum Disorders. On ERF, University of Zagreb,

there are 4 courses on ASD that cover, theory, interventions and prac-
tical experiences with persons with ASD of diverse abilities and ages.
IACIIC-ASD will be a theoretical course but a very important begin-
ning of development of ASD curriculum that will be incorporated in
study programs of universities that still don’t have such courses. This
will empower future professionals for better understanding and sup-
porting needs of persons with ASD and their families.
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Applied Behavior Analysis.
The Romanian story
Loredana Al Ghazi, Damian Nedescu
“He is the father of the first Romanian child recovered from autism”.
This is the way the mass-media presents the man I virtually met
13 years ago on a forum. I was searching the internet for “autism in
Romania”, preparing the next day course for my students, aiming to
present the state of the affairs in the field. After two or three hours
spent on autism.ro, I realized I discovered a treasure: it was much
more there than questions and answers, much more than just par-
ents sharing personal stories, asking and giving recommendations for
specialists, or therapies, or fighting on them. There were scientific
articles, the latest research results, books, Romanian translations of
various resources, instruments for assessment… It took days to go
through everything, cognitive and emotionally challenging, but I was
in the state of flow reading, saving materials, taking notes. When I fin-
ished, I said to myself: those people are writing history here without
even realizing that. A page of autism history in Romania, written by
the people who lived it, not by academics or professionals of the field.
More than 15 years after the forum was created, one of its most
active writers stands now right in front of me. It is not a nickname
on the forum anymore, he is a real person with a real name: Damian.
Damian Nedescu.
I am not sure how am I supposed to start the conversation. I am
not a journalist, I am not a mother of a child on the spectrum, I am
not a practitioner in the field, I am just a teacher/researcher interested
in autism theory and history more than practice, so far. And then I
remembered the subtitle of one of the most unique books on autism
I have ever read: Adam Feinstein’s History of autism. Conversations
with the Pioneers.
I told him I have this idea of writing a book chapter in Feinstein’s
manner and he agreed. Maybe because it was something else than
what he was used to: interviews for magazines, TV or radio programs
and, more recently, writing on his blog or social media. The audience
is different, the format is different, but the man enjoys differences and
to be challenged. Finally, I decided not to interfere too much on the
transcript inserting lots of references and footnotes. I let the pioneer
to tell a story- about his child, about himself, about them as parents,
their struggle and their victory, about ABA, about autism in Romania
in the 2000s and nowadays.
People credit you with bringing Applied Behavioural Analysis in Ro-

mania (ABA). How did ABA get to Romania and how come Romania
currently ranks among the first countries in the world in the field of
applied behavioral analysis when it comes to the number of specialists
relative to population?
It is not easy to explain. It was a combination of factors. First of
all, it was the fact that Romania made a very early start on this route.
Earlier than 95% of the countries in the European Union, even before
Romania joined the Union. At that time, in 2002-2003, the only coun-
try in Europe with some activity in the field was the United Kingdom,
which was following the overseas model. Using the same language as
the US, it was infinitely easier to replicate a method. Romania some-
how got in the way. Absolutely by chance. My child was diagnosed
with infantile autism when he was about 2 and a half years old. In the
next year and a half, approximately, we tried to find support from
specialists in Romania. I mean, like any parent, not just from spe-
cialists. From everyone we hoped could offer us a solution. Almost
blindly, like any desperate parent. Medicine, psychology, the church,
bioenergy, medication or any alternative therapy. Or less therapy. I
hardly missed anything.
And what was your experience with this mix of approaches? I ask
because I imagine this is the path many parents still take Any kind of
results?
Well, everything started extremely slow. Just like a diesel engine
starts. From the beginning. In the sense that the first diagnosis came
with difficulty. We had another child, five years older. The discrep-
ancies between the development of the older versus the development
of the young one raised our first suspicions. Then the pediatrician’s
suggestion to go to a specialist for a consultation gave us the first con-
firmation. At first, they tried to put off giving a diagnosis until the age
of 5. I think that would have ultimately led to a disaster.
Applied Behavior Analysis 183
You mean delaying the diagnosis, or…

It’s because, as I learned much later, neuroplasty of the brain drops
sharply after the age of 7-8, approximately. It does not disappear but
makes things much more complicated in changing behavioral reflexes.
This is the reason why an early diagnosis can make the difference be-
tween success and failure.
Can you be more specific?

In the case of children and families of children with autism, I
learned that the variables that can lead to a happy outcome are many.
Some of them start with the age of diagnosis. As I said, brain neu-
roplasty drops drastically after the age of 7-8. This means that, met-
aphorically, before this age, if I have a nail in my hand, it is as if I
were carving in a playdough ball. I can carve grooves. Deeper or more
shallow, more complicated or simpler, I can focus on complex areas
or focus only on certain things. After the child is 7, I have the same
nail in my hand but instead of playdough I have a granite block. I
can “scratch” and if I am determined enough, I can even carve deep
grooves. But by no means can I stand the chance to get a sculpture
out of it, as I would have liked. Now let’s think mathematically. If
I have this chance only up to 7 years old and if the minimum time
for an ABA intervention covering most levels is about two years, it
means that I would have to start intensive therapy somewhere around
4-5 years old, at the latest. Most parents need about a year to accept
the diagnosis and start planning. Until then, there is a kind of denial
or, at best, a passive acceptance of the situation. So if I do not have
an extremely straightforward diagnosis before the child is maximum
40-48 months, the chances of that child having the option to recover
or at least to reach his/her maximum potential decrease sharply. To
speak frankly, they lean toward zero. Therefore, the age of diagnosis is
crucial. That’s why I say we were lucky to have an early first diagnosis.
We, therefore, had the time to try everything else and, at the same
time, to accept things as they were. It is not at all easy for parents to
acknowledge the problem they have. Especially for dads.
Do you think there is a difference between the way a mother per-

ceives a child’s autism diagnosis and how a father perceives it?
Absolutely. Autism. Infantile autism. Autistic hints. Autistic ele-
ments. Atypical autism. ASD (autism spectrum disorders). All of
them, diagnoses. Which each family perceives differently. Sometimes
it happens, not infrequently, that even members of the same family
perceive it differently. Mother one way, father another. Or vice versa.

One of them is not aware of what is happening or has false hopes,
thinking that, as the child grows up, the child will recover. On his/
her own. Or that his/her own life will not change much in the years to
come. I cannot make out if it is a matter of denial or somehow related
to one’s own comfort and the instinct of survival on the psychological
level. I was the same. I know exactly. I could bring to my defense
that, at that time, about 18 years ago, the existing level of information
or the knowledge of the specialists leaned towards zero, as well. For
whatever reason, my brain had the same reaction. On the grounds
that it could not happen to me. I had a promising career, a wonderful
family, other things to do. Autism? What the hell is that? My baby had
a delay. So what? He will recover when he goes to kindergarten. In
the first year after diagnosis I did go to doctors, specialists, therapists,
etc. But without involvement. As if it had been part of a job. On my
part, it was rather a kind of compromise so that I wouldn’t argue with
my wife. All this lasted until reality hit me. So that I was breathless.
Exactly what “hited” you? It was not the diagnosis per se…
The little one was about 3 1/2 years old when my mother-in-law
found out in a newspaper that a foundation was setting up a kinder-
garten group for autistic children. They had received a grant from the
World Bank and a year earlier they had formed a group for older au-
tistic children. That year they wanted to try it out with preschoolers.
Older autistic children, preschoolers?! I had no idea what these no-
tions meant at that time except from the chronological age of my child.
Said and done. I called and made an appointment sometime the fol-
lowing weekend. “Should we come with the child? No, that’s not the
case.” Ok. The following Saturday we looked for the address, parked
the car and walked a short distance. We stopped before a tall, green
metal fence. Two buildings with a yard between them, everything
closed within this forest enclosure, about 3 meters tall. Clean, painted,
beautiful. We tried the gate. Nope. Locked. My wife was looking for
the phone to call the lady we had talked to. She was dialing the num-
ber and I was ringing the doorbell like a white dot in the sea of green,
which I noticed somewhere to the right of the gate. She is talking to the
lady on the phone and almost at the same time, after a few moments, a
click is heard and the door is unlocked. It will not open. But you feel
it is no longer locked but barely open, a centimeter or two. My wife
keeps talking and I smile and walk inside. From here on, everything
becomes chaos. I took three steps in, to make room for her to enter
behind me. I could not take a look around at all. Immediately a little
girl embraced me. Almost a woman, actually. I found out later that she
was 16 years old. If she had sat somewhere and hadn’t said a word you
would have guessed that she was a high school student. At least by the
number of pimples on her forehead. Otherwise, cute. The average high
school girl. She took me in her arms, put her head on my shoulder and
started to babble something. I didn’t understand what he was saying.
But I was paralysed. Only my eyes were moving and I was looking
around the yard. About two hundred square meters of courtyard be-
tween the two buildings we had seen from the street. Which, I then
realized, were actually three building units. U-shaped. Within these
two hundred meters there were about thirty or forty people. Of differ-
ent ages. If you had had a magical remote control and you had pressed
“pause” that is what you would have seen. 30-40 people, aged 15 to
50 years old, walking around the yard. It’s just that… they were mov-
ing. And then you could notice the difference. About 20 of them were
young. Very young. I found out later that they were between 14 and 25
years old. They displayed exactly the same behavior that my child had
at 3 and a half! My child was completely non-verbal, he was wearing
pampers, could not eat on his own, could not understand what he was
told, could not dress or undress by himself, had dozens of stereotypes
and self-stimulations. They were waving their hands, stared blankly
at a wall or, on the contrary, looked like they were arguing with it,
were running around the yard, had fun with a plush toy in their hand,
were jumping, laughing alone. Zero interaction between them. That
was the most striking aspect for you if you had watched them for a
few minutes. And I had those few minutes, with the high-school girl,
stuck on me. Then came two ladies. My wife was still petrified near the
gate, making no gesture. Only big eyes, wide open, told the story of the
storm in her mind. One of them gently took the high-school girl away
from me and the other closed the door behind us, they smiled and one
of them introduced herself as the manager of the center. In the two
hours that followed, I stayed with the manager in one of the rooms
inside. Overlooking the yard. I can’t remember what she told us. I
mean, I do know. I classified all the information she gave us about the
group of preschoolers they were preparing and put it in the drawers of
my mind. But my attention was focused elsewhere. I found out, among
other things, that those in the yard were autistic children. Of different
ages. And who had exactly the same acquisitions and behaviours as
the little one I had at home. They had brought them together in a kind
of group. Not a class. A group. They were doing activities together.
Some activities and somewhat together. In fact, they were trying to

keep them happy for several hours a day. And give parents 4-5 hours of
freedom every day. They could not do more for them. I asked if there
were drugs or therapies or something. The lady there enumerated the
medication that “children” in the yard were taking and some kinesio-
therapy exercises and some other therapies. She also explained to me
that there was no chance. But that we can keep our children happy. I
had heard those words before. We left the place stone silent. Neither I
nor my wife uttered a word until we got to the car. I drove to my house
in a trance-like state. And there we looked at each other and each went
to a different room. I think I needed a reset. We both did. Actually,
I needed it most.That was the day I realized, empirically, as my mind
could process at the moment, that it was not like a cold, that it does not
wear off by itself, that my child would not evolve once taken to kinder-
garten, that he would not recover from exposure to the environment.
That many years later, my child would communicate, maybe with a few
extra words, at the age of 20, just like those adult children we saw in
the yard. I didn’t touch the subject at all that day. We made our plans
for our child to attend that kindergarten group the following year. But
nothing about what we had seen there and had terrified us both.
The next day, in the evening, before going to bed, we stopped in
front of the bedroom and I said, out of the blue: “Our child will not
end up like that. I’ll get him back. He will get well.” She didn’t ask me
what I meant. She didn’t ask me how. She only asked me one ques-
tion, looking into my eyes. “Do you promise?” And I said “YES”. I
had no idea how I was going to do it or what that meant. I just knew
I had to find a solution. It was the day I woke up!
You woke up and you came with the plan of doing what? Starting
where, going where?
Then it was the day I decided to do something in the most concrete
way. We continued to look for solutions in Romania and then, step
by step, to look into what was happening in Europe. But beyond a
few regrets and dry explanations, no one in Europe had any solution.
Except that, when he got older, we should send him to a sanatorium
and, in the meantime, try to make another baby. The following year
we got on the plane with the objective to find out what was happening
in the United States in this field. Remember that we are talking about
the beginning of internet times and the few companies that had sur-
vived the dot.com bubble were barely licking their wounds. It was the
spring of 2003.
Did you bring specialists from the United States?

It’s not that we didn’t want to, but at the level of 2003, there were
hardly any specialists even in the United States of America. Lovaas
had published in 1987 the first study on the application of ABA to
children with autism. With results that had blown away everything
that was known about autism at that time. That is exactly why the
scientific community was boldly challenging the results of Lovaas’s
1987 study at UCLA. To put things together and to be considered
in the most concrete way, approximately 26 studies were carried out
over the next ten years, replicas to the initial study. On sites all over
the world. The fact that the results of these multi-site replica studies
were almost identical to those of the initial study made the world ac-
cept them. With reservations but they did accept them. The replicas
of Lovaas’s study were published in 97 ‘. Perhaps for most ordinary
people, these few years that passed from the publication of the stud-
ies to the time when we landed in New York, in the spring of 2003,
seem like an eternity. For the scientific and academic community a
few years are a moment. So at that time, the concept of specialist in
ABA did not exist in America, either. In 1998, the BACB certification
appeared as, so to say, a niche issue. At the time, for example, there
was no behavioral analyst in New York State. Or we didn’t find any.
It’s not that we didn’t know what we were looking for. Therefore,
I took it methodically. I made a list of all the therapies that were in
vogue and that were widespread at the time. TEACH and Son-rise
were among the ones that attracted my attention most. And the ones
we started to study in detail. Concepts. Then the testimonials. Then
any article that referred to them. We took from the libraries all the
books about these two therapies or any others that attracted our at-
tention. This is how I came to study the journal of clinical psychol-
ogy, for the sake of efficiency, and from one article to another I came
across Lovaas’s study in 1987. It struck me. Like a bucket of cold
water after a night of heavy drinking. Because it was the first study
that stated, black on white, that a child with autism can be recovered.
A study, not a parent’s testimony. This was the turning point and the
first time I read about ABA. Then we started digging. Like archaeol-
ogists. I discovered Skinner and more from Lovaas, I went through
everything. Again in bookshops or the library. Three months later,
when we returned to Bucharest, three of the four huge suitcases we
had were with books and printed articles about ABA and everything
associated with it. Not necessarily ABA for autistic children but ABA
in all forms and fields of application. Once we got home and studied
everything we had taken with us, we realized that we needed a lot

more information. But, above all, someone to guide us. So I ended up
blaming myself that we didn’t try to get to UCLA, at Lovaas depart-
ment, when we were in the US. But I did it from Bucharest. I terror-
ized those at UCLA on the phone. Until I managed to talk to Lovaas.
I explained exactly who I was and what I wanted. And he explained
that he could not help me directly. Because geographically we were in
different corners of the planet. But he gave me the contact details of
one of his close collaborators, who had worked on the YAP (young
autism project) and the studies done there, and who, in the meantime,
had relocated to London. Diane Hayward, together with Professor
Svein Eikeseth had founded UKYAP, one of the sites where the 1987
study was replicated, based in the United Kingdom. Diane was preg-
nant and was about to give birth but she agreed to send me one of the
consultants she had available. Liz Shew. Who landed in Bucharest
four months later.
So, in the end, you brought the specialists from the UK with whom
you recovered your son?
Not really. Partially, to be more specific. It’s actually much more
complex. By the time we received approval from UKYAP we had al-
ready studied everything that had been published in the world on the
topic of ABA at the time. I realized that the teams that participated
in the studies were multidisciplinary teams in which each participant
was an expert in his/her field. Moreover, the teams already had at least
one or two people who had studied autism and had been specializing
in behavioral analysis for many years. We did not have this time at our
disposal. Let’s specialize people. For us it was a fight against the clock
even before the first consultant from UKYAP set foot in Romania.
Therefore, we got a head start. We hired about twenty people, as soon
as I had the exact date when Liz was about to land.
Specialized in ABA? Or in psychology? Or what kind of professionals?

In theory, yes. Or so we wished. That is, I posted ads in the most
popular newspapers, looking for graduates in psychology to work
with an autistic child. The experience was not required, and training
was free. I received hundreds of CVs because the post itself prolifer-
ated the concept of team. Then we started to build. The advantage I
had was that I had no budget constraints and that I had experience
building teams. Not in this field, but I had already built more than
twenty teams in my career, in different fields, in different companies,
local or multinational. I set the criteria for those we wanted to choose,

and I started to run interviews. In a couple of weeks, I saw about a
hundred people. I chose about 20. I invited them home, to some kind
of a trial. I mean I had them play with the child for two hours.
What were your criteria of choice?

The irony is that I deviated significantly from the criteria, from the
first moment. In the sense that, in the initial 20 people team, I chose
a psychology graduate who did not know English at all, a graduate
of a faculty of economics who was head of a store at a supermarket,
a medicine graduate who had never worked in the field because her
husband was a diplomat by profession, a national martial arts cham-
pion and so on. In fact, the true selection criteria appeared in the
weeks when everyone had to come at our house and play with the
child. Each had two such meetings. I cut off the shortlist all those
who were late. Even if it was only for 1 minute or if the explanations
and reasons for the delay were extremely relevant. I excluded them
because we knew that time was our worst enemy. In our case, minutes
could make a difference. The second criterion was the one related
to how they were played. Imagination and effervescence were very
important. But even more, the number of attempts and the determi-
nation to try again, even if the child rejected them mattered more. In
at least in two cases I chose determination despite lack of imagination.
Two weeks later nine remained. At the end of the first month only six.
Then I took out the most important studies and books about ABA as
an approach. And each member of the team had to read from one day
to another a chapter or study, and then explain it to the others in the
team. In fact, I kept this system for the next year and a half.
What about you, the parents?

What about us? We were part of the team. We were doing what the
others were doing. Everything. We had our hours of working with the
child, playing, while the others were watching us on the monitor, from
the room next to us. And we were reading a chapter and explaining it
to the team the next day, and we maintained the same rigour that we
subjected them to. In everything we were doing.
Were you filming what you were doing?

Everything. Without exception. I filmed everything. Basically, al-
most six months before Liz came and even before we hired the 20
people, we installed a camera in the office where the sessions would
take place. And from that moment nothing that happened to the little
one was missed, nothing happened without filming or collecting data.
How many hours of therapy were you doing?

Basically … all day. Theoretically, 40 hours a week. In the 1987
study, the YAP (young autism project) teams made public the num-
ber of hours in session with children in the study. Respectively, be-
tween 20 and 60 hours per week with each. The average per week
was 40 hours. Therefore we took this number of hours as reference.
That was the theory. Practically, the whole team came in the morning,
at 8 o’clock at our house and they all stayed until late at night. 20.00
P.M. most of the time. After that, we, the family, were leading our
normal life. But with the precepts of ABA running through our veins.
Basically, the little one, beyond the therapy itself, was involved in var-
ious activities and supervised continuously. If we view this under the
incidental teaching prism, we were doing ABA with the child after the
therapy hours were over. ABA became a way of life for us. Therefore,
the answer to your question is: all the time. Especially in the first year
of therapy, it wasn’t just therapy at all. It was schooling for us all, the
team. And a reconsideration of our whole family life.
As a family, has your life changed?

Completely. In fact, everything that happened was a conversion of
all the activities in the house, starting from his needs. And those of
the team. We haven’t forgotten, not for a second, that we all had to
learn. Again, beyond the fight with Radu’s disability, our struggle was
against time. We had time to recover him before he was 7. Two years.
In these two years we had to help our child to recover the gap. But
in order to do that, I needed a team that had to become immensely
experienced. In an extremely short time. I set the pace. Intensive. Be-
cause time was not on our side at all. So I built a whole system. To
have a chance. This meant that all the therapists, together with us,
started the program early every morning at 9 am and ended in the
evening, around 8 pm or 9 pm. It didn’t matter if on that day only
two or three or four of the therapists were on call. We were all there.
Physically. Watching on the monitor from another room what teams
of two therapists were working inside. That way the feedback I got
from each hour was instant. Basically, every hour of therapy became
another hour of experience for everyone in the team. That was also my
biggest gain. About a year after I started the therapy I had the right
team and they worked clean. Applied behavioral analysis.
What happened next?

The London consultant from UKYAP came to us every 2 or 3
months. Usually she gave us on average about 40 programs. Some in
the current session and about half new programs, to be introduced
after we used the current ones in generalization.
What is the difference between a current program and a generaliza-

tion program?
Applied behavioral analysis creates new patterns of behavior. Some
of them are somewhat mechanically introduced, actually grinding the
needs of the child or sometimes creating that need. The ultimate goal
is that everything the child learns can be used in everyday life. Only
then can you consider that a program is a mastered. When the society
itself and the context become rewarding for the child. In fact, in ABA
you teach the child to learn. You cannot say that you have a mastered
program before the child is able to take things alone from the environ-
ment and learn them. Therefore, both items and programs are mas-
tered. First of all in any form you chose to teach it to the child and then
in generalization. Generalization means that the respective child will
demonstrate the learned ability, in any context, with anyone, regard-
less of location. That is, it becomes intrinsic and natural to the child.
So she gave you about 40 programs every few months. What hap-
pened next?
At one point, after about a year of therapy, we had become so good
and knew the child so well that not we not only finished everything
the consultant gave us, but we invented new programs, created based
on the needs of the little one. Based on Liz’s last two visits, almost two
years after we started therapy, at one point she told us straight: “At
this moment, as far as Radu is concerned, I simply don’t have anything
else to teach you. Moreover, I started taking elements from the pro-
grams you created and I use them for other children. You’re already
paying me for nothing”.
It was the moment when we understood that our adventure and
our struggle with autism regarding our child, was coming to an end.
Was that all?

Not even close. A few months later, somewhere through the fall
of 2005, I arranged a few assessments. Actually two in Romania. Two
teams of psychologists who did not know one another were asked to
evaluate Radu, without knowing anything about his history. Zero an-
amneses. The first team evaluated him at our home for three days and
the second, at their office, for two days. The results of the reports, one
week later: no trace of autism. In one of the reports there was a note
related to a slight attention deficit. Then we got on the plane and did
another evaluation in London, at the clinic of one of the most reputable
psychiatrists. The result of the report identical to those of Bucharest:
no trace of autism. It was only at that moment that we relaxed and
confirmed what we sensed: we had been through the hardest part. And
Radu was probably the first child recovered from childhood autism in
southeastern Europe. The reactions of the teams that evaluated him
were amusing. While the team of doctors and psychologists in London,
when told about his diagnosis two years before, after reading the docu-
ments said only so much: “you made a heck of a job!”, the first reaction
of the teams in Romania was: “I think he was misdiagnosed!”. Not even
the 7 diagnoses and 3 certificates of severe handicap made them change
their minds. It wasn’t until they saw the videos of Radu’s first therapy
session that they were “wow, we didn’t think that was possible!”
And then what else happened?

With Radu? A lot. In the sense that we continued the run. Yes,
from the medical point of view he no longer met the criteria for au-
tism. Not at all. But he still had big problems in social, emotional, con-
textual, etc. areas. Therefore, we became aware that he was recovered
in a proportion of 98%. The other 2% took us another 7 or 8 years.
About the time Radu got into high school.
Still ABA?
Not. Or, I mean, not as intense and structured. ABA is the science
of human behaviour. It has nothing to do with autism. That is, we all,
regardless of context, operate on the basis of A-B-C (antecedent-be-
havior-consequence). That’s how we learn, that’s how we live our life,
based on it. Every day. So, looking at it from this perspective, yes, still
with ABA. But moving on to a more holistic approach and exposing
him to as many experiences as possible. The theory of mind was the
next path we followed and from which we extracted most of the exer-
cises and directions we used in the following years.
Was he accompanied by a therapist at school? As you said, everything

lasted until he enrolled in high school.
He was accompanied by a therapist all the time. Starting from kin-
dergarten, through the second or third grade. Obviously, as the time
went by, the therapist’s involvement lessened. Often, in the end, we

only had a camera set in a corner of the classroom and we filmed
everything. The therapist only went to retrieve the footage from each
day. And when the high school topic came up, although from kinder-
garten to school he studied in the private environment, I decided that
the next step would be to enter the state system of mass education,
without anyone knowing anything about his history. I paved the way
a bit, it’s true, but I let things flow naturally.
In what sense have you paved the way?

From the first moment, when I chose the high schools he could
attend, I chose the high schools that had by definition many girls.
Girls are more tolerant. Considering his affinities to academic sub-
jects, I chose the high school ‘Iulia Hasdeu’. Philology and History.
And that’s how Radu came to study philosophy in Belgium.
How was it in high school?

Like any other high school kid. Or a student’s life in a high school.
You mean nobody knew about Radu’s condition?

That’s right, no one knew. Neither his teachers, nor his colleagues.
In fact, his girlfriend at that time learned of his history in a PROTV
feature from the summer of 2018.
So, going back to the initial question, how was ABA introduced in
Romania?
About 7-8 months after we started the first ABA workshop with
Liz Shew, we realized that we were on the right track. We were lucky.
Or Radu was lucky. One way or another the stars aligned for him. We
were part of the lucky ones: the financial situation allowed us every-
thing, both me and Cristina had the managerial experience to manage
multidisciplinary teams and I was extremely experienced in creating
new projects and giving them life. Therefore, we were able to do what
no other family either afforded or they simply failed. But we, like oth-
ers, have climbed the agonizing hill of the Romanian health system for
about two and a half years. Therefore, we wondered, if it had been so
complicated for us, what chance is there for any family? The answer
came promptly and quickly, beyond any doubt: zero chances. So I felt
it was our duty to give something back to society.
How did that actually happen?

The first time I tried the … easy way. I contacted two associations
that were already involved in the field of autism and I made a proposal
to finance them and offer them directions and how to do it, how to
specialize, etc. It’s just that … the two experiences were hallucinating.
What do you mean?

I mean, the first association had received a grant from the World
Bank to publish a specialised journal in the field of autism. Not about
behavioral analysis but about autism in general. I did not fully agree
with the editorial content because it rather promoted the idea of sup-
port for parents and palliative therapy. But I considered it an informa-
tive environment for families. So I proposed to them to carry on pub-
lishing the magazine even after the grant was over. They had received
a grant that funded the first 4 magazine issues. We submitted an offer
to them in which we undertook the editing and printing, as well as the
distribution. The only thing they had to do was write or receive ma-
terials. Content therefore. They told us no, that was not enough. They
wanted money. “How else do we show our sponsors that we can raise
money?”, they said. I was silent. They preferred to give up publishing
the magazine rather than us funding the indirect services. They wanted
the money. The second experience was even worse. We went to the
center where Radu had been a resident for several months and we pro-
posed to the decision makers there to fund them and at the same time
to help them bring in specialists from outside and specialize their peo-
ple in ABA. Moreover, I brought them all the books and documents,
studies, Radu’s personalized intervention plans, videos of Radu, etc.
Everything. They agreed and we started a fundraising campaign where
both our companies and business partners and friends started donating
money in excess of a 5 zero sum. In Euros. Reality hit us a few months
later when two things happened. The clinical director of the associa-
tion, a psychologist lady who had constantly opposed the introduction
of ABA at the start, published a book based on all the information and
documents we had made available to her, claiming them them as if they
had been hers. Including there even fragments of Radu’s intervention
plan, as if she had created it herself. The second thing was an audit
that I ordered, naturally for the finances of the respective association,
because in one way or another I had guaranteed the fun raising with my
name. I was shocked when I saw that 25 thousand euros were missing
from the amount raised. And to my question where the money was, I
was nonchalantly answered that gifts were purchased for the members
of the association! I was perplexed. Those people did not understand

that the money was raised for the children and to fund programs for
them, not for Christmas gifts for the members of the association. It was
the moment when I decided that it was healthier to create something
that would support the interests of the little ones and make a difference.
Was this “something” the Horia Motoi center?

Not realy. This “something” was “The Pilot Project for Helping
of Children with Autism in Romania”. A project that initiated the au-
tism.ro site, information campaigns, the Horia Motoi center, a law
for the settlement of therapies, lobby to decrease the age of diagnosis
of children with autism (in the US a diagnosis could placed from 18
months while in Romania no doctor wanted to give this diagnosis un-
til the child was 5-6 years old), it brought a course approved by ABAI
in Romania, respectively BCBA (Behavior Analyst Certification Board
- international forum for the certification of behavioral analysts) and a
few other projects which supported the development of ABA applica-
tions and interventions in children with autism.
I think it’s a natural question: who was or what does Horia Motoi
come from?
Horia Motoi is my grandfather’s name. The one who raised me
and instilled in me a certain conduct. He loved children deeply. It’s a
tribute to him.
I noticed you never say “ABA therapy”…

ABA – applied behavioral analysis – is a science that studies human
behavior. It has become a science for many years and is not related to
autism. Or with children with ASD. That is why I am away from call-
ing it therapy. ABA is the science of human behavior viewed strictly
from the perspective of behavior, without other embellishments. It is
related to psychology in a way but it has gained independence long
ago and it is another line.
What do you mean “without other embellishments”?

As I see it, psychology links emotional chemistry to certain behav-
iors. ABA, as a science, ignores anything that cannot be measured.
When you say “I was angry and I threw the glass at the wall”, a psy-
chologist will focus on the question “why were you nervous?” A be-
havioral analyst will focus on “I threw the glass at the wall”. That is
because he cannot measure “anger”. This means that they start col-
lecting data: how many times do you throw the glass at the wall a
week, at what times, what is the context in which you do it, what is the
function of the behavior of throwing the glass, etc. From the perspec-
tive of behavioral analysis, a behavior, any behavior, has dimensions.
Like a closet: height, depth, width, etc. If I want to furnish my bed-
room and I want a closet, I don’t just go to the store to buy a closet. I
go to the store with the dimensions of the closet I want. Otherwise I
have all the chances that the closet I order won’t even fir through the
door, not just not fit in the place I planned. So are behaviors. They
have dimensions and functions. Frequency, strength, intensity and
obviously, although not a size, a function. Like any piece of furniture.
In the end, behaviors are the furniture from our “attic”.
Well, and what about emotions, cognitions?

That’s what I was saying: what you do with “being angry” is the psy-
chologist’s job. The task of the behavioral analyst is to make you have
another type of behavior when you are nervous and for example not
to throw the glass at the wall. Because that’s the essence of behavioral
analysis. The study of human behaviors begins with the way people
learn and acquire certain behaviors, ever since they are born. Until
they close their eyes. We are an adaptive species, which is constantly
learning. ABA is studying this. How people learn, acquire and fix be-
haviors. And how, in effect, adjustments can be made to ways of learn-
ing so as to change behaviors or learn to use certain behaviors faster.
Of course, ABA as a science has a lot of practical applicability but

people associate it instantly with autism…
That’s right. It’s been used for decades in organizations, human
resources departments, army organizations, secret services or police,
corporations, the field of ecology to change the behaviors of those
who live in a certain area to take more care of the environment, in
the area of AI (artificial intelligence) to learn faster, etc. Of the ABA
component that refers to the study of how humans are learning, one of
the applications refers to children with ASD. This is why I have been
lately avoiding the term ‘therapy’ and I prefer ‘intervention’.
Resuming, what does the application of ABA mean for children with
ASD?
ABA intervention in children with ASD is actually the line of ABA
that deals with studying the acceleration of learning models in hu-
mans. Because ABA intervention in children with TSA (autism spec-
trum disorder) is focused on accelerating the learning of skills to the

point where a child with autism regains behaviors and abilities so s/he
can no longer be distinguished from a neurotypical child.
So, can autism, or ASD, as it is now called, be cured?

Autism or ASD is not a disease. So by definition you cannot “cure”
it. Because, as I said before, there is nothing to heal. Physiologically
there is no difference between a neurotypical child and a child with
ASD. Lets say, from a physiological point of view, they are perfectly
normal. The mechanism that does not work in their case is the one
through which we, neurotypicals, learn. Therefore, as time goes by,
the neurotypical child learns from the environment and thus devel-
ops all kinds of new skills while the child with ASD does not learn
and therefore remains increasingly behind. So much so that s/he can
never reach the neurotypical one if he failed to balance the set of skills
acquired until around the age of 7.
So I understand that ABA as an intervention is really nothing more

than a form or a teaching technique?
Yes, essentially, it is. We humans work when it comes to learning,
from early childhood, in an ABC system - antecedent - behavior - con-
sequence. That is, we learn any new behavior (ability) based on this
principle. The antecedent is everything that has happened until then
in our life regarding that behavior and the consequence is the natural
thing that happens if we have that behavior. More precisely, if we
listen to our parents when they tell us not to stick a nail in the socket,
it means that behavior, sticking a nail in the socket, does not appear.
So, the fact that they told us and we listened to them means that they
have altered our antecedent. Therefore our behavior was changed
and, even if we wanted to, we never stuck the nail in the socket. If, on
the contrary, we stuck the nail in the socket and we were electrocuted
(pain), next time we will use the consequence as an antecedent and we
will change our behavior. The same applies to the way we learn other
things, like, for example, we like cakes. In fact, we learn about every-
thing and everything in the same way. Unfortunately, the child with
ASD does not learn at the same rate as a neurotypical child. In fact,
the difference between the learning speed of a child with ASD and a
neurotypical child is huge. In one day, a child has on average about
a thousand learning opportunities. While the neurotypical child gets
about 30-40 of them every day, in most cases, the child with ASD
gets 2-3 per month. As time goes by, the discrepancy between what a
neurotypical child knows and what a ASD child knows, is huge. The
ABA intervention focuses in particular on increasing the acquisition
speed of new skills of the child with ASD. This thing is personalized.
Because every child with ASD is completely different from another.
Therefore, the whole plan and strategy to follow in order to accelerate
his/her learning speed is specially designed for the child to whom it
is addressed. It is not a general issue applicable to all children with
ASD. That is why I am not calling it therapy. Because it’s not. It’s not
even a teaching technique, since you were mentioning it. It is a science
and a combination of teaching and intervention techniques to maxi-
mize the learning speed of a particular child with ASD.
Then lets put it this way: ABA is the science that studies human be-
havior. Do you think that ABA is the first intervention that is suggested
as soon as a child is diagnosed with ASD, in Romania. How come?
Yes, according to the latest studies, in Romania, the first suggested
intervention (80.6% - Salomone et al., 2014) for children with ASD
is ABA. It’s not just in Romania. In the USA it has been the first rec-
ommended intervention in young children with ASD for years. More-
over, in 39 states out of 52, it is not only suggested, it is also fully set-
tled. In fact, it all started about 15 years ago in the most serious way.
When American insurance companies made a simple calculation: a
child who becomes an adult with ASD costs $30-50 thousand a year.
Throughout his entire life, that means between 2.5 and 4 million dol-
lars. If a percentage, some percentage of these children can recover, it
means not only that they no longer pay, so they save millions, but they
manage to integrate them into the system and naturally, the recovered
adult will pay taxes to the insurance companies. It’s a strictly eco-
nomic calculation. A calculation of economic efficiency. This is how
a lot of money from insurance companies has been directed towards
various studies in this field so that the intervention methods can be
refined and become more efficient. There were no studies in Romania.
But the legend that Radu became illuminated the path of many fami-
lies. Obviously, besides the professionals, there were those who read
two books and made from ABA only a commercial product to serve
to the parents. But what they do is not related to ABA. For the simple
reason that they have no training in this field. They graduated from
the faculty of psychology and are applying some psycho-pedagogy of
recovery with certain ABA concepts that they consider effective. Ob-
viously, this makes the intervention totally ineffective in its essence
but … this is a completely different story.
Still there are recovered children in Romania. And the field is grow-
ing more and more.
Indeed, there are. Many. I do not think that anyone has reached
or come close to Lovaas’ percentage or the replica studies after him,
respectively 47%. We are talking about only a few hundred children
recovered in Romania over the last 15 years, although every year, ac-
cording to statistics and the incidence rate in the country, about 3500
children with ASD are born annually. It is an ocean in a sea of despair
but there is a chance. And the field is developing. Quite strongly. But
it is a field with sustained development and, in the absence of deter-
mination and greed, to be constantly up to date with the news in the
field, you have every chance to lag behind.
What do you plan to renovate or innovate in the field in the coming

years?
I haven’t planned anything sine die. I don’t even think it’s some-
thing that you have to plan. It just happens. Or it doesn’t. I would be
happier if the number of specialists completing postgraduate training
in behavioral analysis increasled significantly in the next 5-7 years.
Because, a few hundred behavioral analysts could really make a differ-
ence in the cascade of children with ASD. Only then would the criti-
cal mass that could generate the change in society regarding Autistic
Spectrum Disorder appear. Furthermore, we have the DAAL Autism
Project which aims not only to replicate the Lovaas and Ronald Leaf’s
studies, but also to offer courses and seminars addressed directly to
the beneficiaries so that the rate of the parents’ involvement increases
substantially.
What do you think about bringing ABA in the Romanian univer-

sities? I mean what would be like to provide ABA training at an aca-
demic level, as many US and some UE universities do?
Romania happened to be among the first countries in the world
where ABA was successfully implemented. Introducing the study of
the behavioral analysis in the academic environment, in the Romanian
universities, under the incidence of the academic arm of the BACB
(Behavior Analyst Certification Board), respectively ABAI (Associa-
tion for Behavior Analysis International), of a VCS course (verified
course sequence), is the next step, most naturally, in the creation of to-
morrow’s specialists, with extremely well-grounded training in ABA.
Behavioral analysis is a science and training in science, to become the
professional tomorrow specialist, to make a difference for children
with ASD, cannot be done other than in the academic environment,

respecting the standards imposed by the globally recognized forum
(BACB). This is how it happens all over the world and Romania and
it cannot do otherwise if we think about tomorrow’s generations. And
with this natural step, the foundation is established for research pro-
grams and for covering the huge need of specialists in the field.
I will do my best to make this happen, as a premiere for Romania, at

the West University in Timisoara. Can I count on your help?
Well, the story must go on!
Thank you! And let’s then close our conversation in an optimistic

tone…
Smiling: “To be continued…”?
Edizioni ETS
Palazzo Roncioni - Lungarno Mediceo, 16, I-56127 Pisa
info@edizioniets.com - www.edizioniets.com
Finito di stampare nel mese di dicembre 2019

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Education

A peer-reviewed book series in social pedagogy, theories of education,

Directors: Fabrizio Manuel Sirignano (Università degli Studi Suor

International Scientific Committee: Enricomaria Corbi (Università degli

Material produced with the financial support of the European Commission.

From schizoid psychopathy to a natural human variation.

The social construction of autism as disability

Case management in Autism Spectrum Disorders

Assessing Children with Autism Spectrum Disorder

Treatment fads and Autism Spectrum Disorder

Communication and language difficulties

The Maladaptive Behaviors in the Autism Spectrum Disorders.

Sexuality and Sex Education in Autism

The Autistic Spectrum Disorder and the Quality of Life.

Students with Autism Spectrum Disorder in Mainstream

A comparison of knowledge about Autism Spectrum Disorders

Applied Behavior Analysis. The Romanian story

This book represents one of the intellectual outputs of the Euro-

The book is structured in three parts: the first one is theoretical,

1. A little bit of history

Kanner once said “I never discovered autism; it was always there”

“the clinical picture shares certain features with schizophrenia, but

“The new terminology” was necessary despite Despert’s opin-

schizophrenic reactions occurring in other age periods because of the

The psychoanalytical (Roser, 1996) pseudo-scientific (Herbert, Sharp

hands.The trouble is that it would be very hard to make an interna-

II. The present

1. ASD- the disorder

tific new treatments or harmful combination of interventions). From

2. ASD- the disability

Over the years, some interventions were developed in order to help

survive”. Are we the “saltwater creatures” that are disturbed by those

3. ASD- the difference

Neurodiversity originated as a movement among individuals la-

However, even if Blume was the first to write about neurological

way we call or address to autistic persons, the way we use language to

research for therapies, treatments, finding the cause of autism, iden-

We also fully subscribe to a narrow concept of neurodiversity, as

Echoing the same author, considering autism as a different cogni-

persons (and those close to them) will embrace autism as a part of

III. The future

There is a notorious question asked by philosopher Thomas Nagel

Look what they done to my song… 14

Firzgerald (2019) predicts that the future of psychiatry will be

precisely know where on the spectrum he will be, in terms of high or

We raised questions more than provide answers but no matter how

Allsopp, K., Read, J., Corcoran, R. & Kinderman, P. (2019). Heterogene-

At the beginning, autism was described as a syndrome. We could

1. Paradigmatic positioning and understanding of autism

Paradigms are both a bless and a course in social science. In natural

of a medical-social model of deficiency, disability and handicap. In

for an improved functioning. The source of disability is in the inter-

Should we try to change the children with disability or the environ-

Should the treatment be based on behaviour modification or on cog-

havioural learning should be more effective. Unfortunately, this line

Should we change environment, attitudes or both?

Why an ecological approach?

Is the theory just an intellectual game?

Once we established that ASD is a real condition (either medical

As a conclusion, we think that theoretical positioning is a necessity

the intervention will be from a scientific established therapy, such as

Al Ghazi, L. (2108). History of autism. The beginnings. Collusions or seren-

1. Case management - a framework for effective interventions